Is Sharyl Attkisson feeling the heat over her irresponsible reporting of the Alex Spourdalakis case?

Yesterday, I did a bit of navel gazing about how cranks, quacks, and antivaccinationists have a penchant for attacking skeptics at work in order to try to intimidate them into silence. Reading the post over again, I realize that it came across perhaps more whiny than it should have, but I guess I was just in that sort of mood when I wrote it. One thing that I didn't discuss, though, is how attacks like this have traditionally been a very reliable indication that that I'm on the right track with respect to the quackery being called out. When I write my usual, run-of-the-mill posts about quackery versus science-based medicine (which are nearly all, BTW, quite awesome), one of them might annoy someone enough to write a blog response. However, it is much less common for a post to rise to the level that a crank becomes agitated enough at me to go to the trouble of trying to make trouble for me at work. So when someone does go to that trouble, I know I've scored a torpedo hit below the water line, particularly when such attacks are closely coupled with a post like this by Dan Olmsted over at the antivaccine crank blog Age of Autism where he is managing editor. Seeing that, I thought it was enough to tack a paragraph linking to the post as further evidence that I was right on target with my post about the brutal murder of autistic teen Alex Spourdalakis by his mother and how antivaccine CBS reporter Sharyl Attkisson lied by omission to hide the involvement of Andrew Wakefield in the 18 minutes of video that was sampled for her report, as well as the involvement of other antivaccine biomeddlers in the "medical" care of Alex over the months before his murder.

Thinking about it last night, I changed my mind. Mr. Olmsted deserves a bit of Insolence of his own. I hate to have a whole week dominated by a single topic on this blog, but if there's a topic that deserves to dominate for a week, surely it is the exploitation by Sharyl Attkisson, Andrew Wakefield, and autism "biomed" apologists of the murder of Alex Spourdalakis by his mother Dorothy Spourdalakis and his caregiver Jolanta Agata Skordzka. Most of all, it's a topic about which I might actually be able to do some tangible good by writing about it again. Indeed, as I mentioned before, the fact that Olmsted has lit up the Crank Signal to call in the AoA Flying Monkey Squad to bombard CBS News with praise of Sharyl Attkisson is a very telling indication to me that the "brain trust" at AoA is worried. Maybe Sharyl Attkisson is worried, too. After all, she was once strongly suspected to the point and, from my perspective, basically almost busted red-handed feeding information from CBS News to someone at AoA a few years ago.

There's also a Change.org petition out there, which you should definitely consider signing castigating CBS News for its journalistic failure and demanding that the video be removed from the CBS News website. Dan Olmsted's sending up of the AoA monkey signal makes me wonder whether all the blogging about the Spourdalakis case in the wake of Attkisson's report and the Change.org petition are causing real turmoil at CBS News, whether Attkisson is taking some real heat over her biased reporting. Indeed, I wonder whether Attkisson dropped a line (or e-mail or text message) to her buds at AoA to let them know that she's taking enough real heat over her irresponsible reporting on the issue that she could use some tactical air support. After all, the involvement of Wakefield in the Autism Media Channel wasn't exactly difficult to find. That CBS producers apparently didn't dig up that little fact bespeaks a truly epic fail of basic journalistic fact checking. When it's a story about autism and/or vaccines, we expect such epic fails from Attkisson, who is blinded by her antivaccine bias. However, We expect better of CBS News. We didn't get it.

So what we see in response is Olmsted pleading:

CBS feedback line 212-975-3247 to support Sharyl. Click CBS Feedback HERE to send message. Tweet @cbsnews and @cbsthismorning.

The death of Alex Spourdalakis is really freaking out the pharma-phunded shills, vaccine injury apologists and self-appointed advocates for themselves, who have mounted what seems like a coordinated effort to discredit Sharyl Attkisson's strong reporting on the tragedy.

What to do? Let CBS know they shouldn't listen to a half a dozen hacks who turn up like worms after a thunderstorm to try to deflect attention from the real issue -- the lack of proper medical care for children suffering -- yes, suffering -- from autism. That suffering surely includes, in many cases as in Alex's, the kind of acute GI damage that Sharyl's report showed last Friday.

You don't hear any of the shills worrying about that. Rather, they trot out the usual key words -- quack, crank, discredited, etc. -- to shut down conversation.

Funny, but I don't hear any of the autism biomed cranks and antivaccinationists troubling themselves overmuch about the murder of Alex Spourdalakis except as an excuse to attack conventional medicine for not being sufficiently accepting of autism biomed and blaming the system, rather than the murderers, for the death of Alex Spourdalakis. Oh, sure, as either a disclaimer or afterthought, they will say that murder is never acceptable—but often in the same breath that they express sympathy for the mother, who is portrayed as a saintly woman completely devoted to Alex but having no help, being at wit's end, and driven to the brink where she came to the conclusion that she and Alex would be better off dead. The result was that she and Skordzka planned Alex's murder for a week. They then tried to poison him. When that failed they apparently tried to slash his wrist. When that failed, they stabbed him in the heart with a kitchen knife.

I do find it rather amusing how Olmsted describes us, though. When he turns up the rhetoric and insults, he's clearly worried. He's also destroyed my irony meter in accusing us of trotting out words like "crank," "quack," and the like to shut down conversation right after he has just referred to his critics as "pharma-phunded shills," "vaccine injury apologists," and "self-appointed advocates for themselves." If those aren't ad hominem attacks designed to demonize one's opponents rather than responding substantively to their arguments, I don't know what what is. Olmsted definitely owes me a new irony meter. (I'll just add it to his tab for past blown irony meters.) As for my accusation (and the accusation of others) that the AoA contingent empathize far more with the murderous Dorothy Spourdalakis than they do with the murder victim Alex Spourdalakis, just look at a sampling of quotes from the comments, one of which is so egregious that it bears repeating, specifically the comment by Sheila Tzorfas:

WHO really killed Alex? …
The Doctors WHO shot him with Aluminum, thimerosal (Mercury) embalming fluid, fetal cells, rats brains, parts of cows, pigs, caterpillars, ether and more in the name of health. The SCHOOL system that did not send viable home services or place him a nurturing, caring environment, the Medical Staff that did not DETOXIFY him; the Spiritual Community too buy to help, the ER doctors whose training in Autism was close to nonexistent, the Neighbors who hid their eyes, the Insurance Companies that waged a battle, the MEDIA, that hides the increase of illnesses from the viewers as 1 in every 6 children have been afflicted with Developmental Disabilities starting in 1991 when all newborn babies get a shot for a sexually transmitted disease that they CANNOT get,the Psychiatrists that did not give him relief, and the surrounding communities which include all…. Shell of,”Recovering Autism, ADHD, & Special Needs.”

As I pointed out before, notice that there’s no mention of the mother on the list of “who really killed Alex.” Apparently she isn’t the one who “really” killed him. Everyone else involved in the case "really killed Alex" but his mother, if we're to believe Tzorfas!

Then there's John Stone:

It's very speculative. What is not speculative is the very extreme circumstances they found themselves in, very low psychological condition, exhaustion, abandonment, destitution. I don't know that anybody has said what they should have done next? Obviously not that, but then what? No one was going to help Alex's pain. Bureaucratically it didn't exist.

So kill Alex and put him and his mother out of their misery. That's the real message here. Then there's John Stone again:

I don't know to what extent the concept of "diminished responsibility" is relevant to legal process in Illinois. There are potentially levels of mental exhaustion, sleep deprivation and physical abuse, not to mention the blind terror of not knowing how you are going to cope in one or two days time (let alone a week or a month) which by any ordinary reckoning might push these ladies well outside the category of first degree murder.

First degree murder seems to me to be the state washing its hands of its own culpability in these awful events. Some people might think that there should be no such distinctions but in a dispensation where there is it seems surprising (not to say vindictive) that they should not have been operative here.

So, to Stone, the state prosecuting the mother and caregiver for murder is "washing its hands of its own culpability," because, you know, autism and the medical system drove the mother to kill her son. It's not her fault!

Then there's Jenny:

Why would anyone think the criminal justice system is any more fair at handling this type of situation than the allopathic medical system? It that naivite or narrowmindedness or what, exactly? They are run by the same folks. To portray these caretakers in the same light as regular killers underserving of pity is to reinforce the false political paradigm that allows both situations to continue to exist. It's like judging slaves, saying slaves were responsible for their own slavery and any of them them that committed suicide or killed their children to prevent them from living through the hell they lived through themselves was unforgivable, instead of placing the blame where it really belongs, the people placing the stressors on another human being and driving them out of their minds. These women are victims of their captors, the same as people with stockholm syndrome, but probably even worse.

So Dorothy Spourdalakis and her son were slaves to autism, and it was actually not her fault hat she decided to murder her own son. Rather, to Jenny, the "system" was to blame. This would be hilarious if the situation weren't so tragic, particularly in light of reports that I described before that Spourdalakis was offered help from multiple sources and turned it down. It's also jarring given that Andrew Wakefield swooped in to try to raise money and ended up doing nothing of value for Alex. Meanwhile, after Alex's death, Polly Tommey and Wakefield, through their Autism Media Channel, are shamelessly trying to sell the 18 minute documentary they made about Alex, footage from which was used by Sharyl Attkisson in her report. The vultures are circling, then swooping down to feast on Alex's cold flesh. Attkisson is just the biggest, fattest vulture out there right now. Maybe she and Wakefield are fighting over the scraps.

Not to Kim Stagliano, though:

We're seeing the full assault on low verbal, behavior-intense boys, girls, teens, young adults with autism right now in the Alex Spourdalakis story that ran on CBS week. We couldn't get the attention of a single media outlet while he was in the hospital. Now, after his gruesome murder, the PR machine has slipped into gear and roared out of the gate to make sure that somehow, anyhow, the non-genetics segment of the autism populations would be tinged, no make that engulfed from head to toe, in guilt. Especially anyone associated with gut injury, and you know who that means, dear AofA reader.

So, apparently to Stagliano, the outrage over the murder of Alex Spourdalakis is a "full assault" on low functioning autistic children and their parents. As for "making sure" that Wakefield and autism biomeddlers are named, well, they were involved. We know this for certain now, thanks (unwittingly) to Sharyl Attkisson, who showed us that one of the chief biomeddlers, Dr. Arthur Krigsman, examined, apparently scoped, and treated Alex. This makes the question of whether the reason the mother isolated herself and Alex was because she viewed the help offered to her by conventional medicine and state authorities to be the "wrong kind" of health all the more plausible. She wanted autism biomed. Conventional medicine and the state recognize most of those interventions for the quackery they are and therefore won't provide them.

Whatever the true case (which will, I hope, come out during the trial), Olmsted issues a challenge:

Maybe these geniuses could show us what a healthy gut looks like and we can compare it to Alex's.

I note that much is made of my having made references to The Dog Whisperer and What Not To Wear in discussing the Autism Media Channel's plans for a reality show about autism. I knew that reference would offend the AoA contingent. That was entirely intentional, as a means of demonstrating that Wakefield's promo for The Autism Team reality show really does hew very closely to reality show formulas. I'm not the only one who noted this. Matt Carey did too.

Olmsted and the AoA "brain trust" also make much of the endoscopic images. This truly amuses me, because, even though at the time I didn't say much about them. I now correct that mistake. I have to point out here that I'm not a gastroenterologist or a surgical endoscopist, but I have done upper endoscopies. Actually, I did quite a few of them as a resident. During my residency, I also did clinical rotations on the service of one of the leading surgical endoscopists in the country. Unfortunately, that was over 17 years ago; so my experience is old. I do, however, have far more relevant experience than anyone commenting at AoA, which is why certain comments over at AoA amuse me to no end. (I'd love for a real pediatric gastroenterologist to comment, though.)

As for the images of Alex's esophagogastroduodenoscopy (EGD) compared to normal mucosa, well, Mr. Olmsted, how about this Gastrolab archive of high quality images from endoscopy or images from the El Salvador Atlas of Gastrointestinal Video Endoscopy, which contains a bunch of videos of endoscopic findings? The more I looked at the images from Alex's endoscopy (which were flashed on the screen so fast that I really couldn't get a good look at them and which are not the greatest resolution when I freeze the frame), the less sure I am that there was actually anything abnormal there. For one thing the images shown were taken with the lens of the endoscope oddly close to the gastric mucosa, and the two white patches now look to me like normal reflection of the light of the endoscope off of the mucosa. There doesn't appear to be any obvious inflammation, but it's really impossible to tell without a wider view of the whole stomach. In fact, on that brief picture, the "lesions" look more or less like veins to me. Certainly, those "ulcers" didn't look like ulcers I've seen. Take a look at ulcers over at the Gastrolab site and you'll see that they are much more obviously holes in the mucosa than anything seen in the brief image shown in Attkisson's report.

My honesty about my uncertainty over whether the section of Alex's stomach shown represents any actual pathology or not (I accept that it might) notwithstanding, I doubt that such minimal changes could account for such severe abdominal pain. Also, I do notice one thing no one is showing us, though. Just looking at the gastric mucosa isn't enough. First off, a wider view is necessary to judge how much of the stomach is involved, if it's even involved with any pathology. Second, notice how no one is showing or talking about the colon, which leads me to believe there isn't even a hint of a wisp of pathology there; otherwise, the AoA crowd would be talking about it, and Krigsman would be showing pictures of it. More importantly, though, notice how neither Attkisson, Krigsman, Olmsted, Wakefield, or any of the antivaccinationists and autism biomeddlers claiming that Alex had such horrific GI issues is showing what really matters: A pathology report of gastric mucosal biopsies showing ulcers, inflammation, or any other pathology. Why is this, I wonder? I have to conclude that, most likely, it's because they don't have it. Either Dr. Krigsman didn't take any gastric biopsies, which would be really bizarre and not consistent with his prior practice as far as I can tell, or the biopsies that he did take showed no abnormalities that Wakefield or the antivaccinationist leeches hanging on to the Alex Spourdalakis case could exploit.

Olmsted finishes with a flourish of such utter black hole grade cluelessness that no clue can escape its event horizon:

Hey Ari, this comment you made to Sharyl is the definition of a straw-man argument: "I think an ideology, a dangerous ideology that preaches that people are better off dead than disabled is what led to Alex Spourdalakis' murder."

What ideology, preached by whom?

Seriously? Doesn't Olmsted even read his own commenters, some of whom I quoted above? Such ignorance is either epic cluelessness or willful ignorance. Take your pick.

Regular readers might reasonably wonder why this whole story matters enough to rate three long posts, look no further than a story hot off the presses in my neck of the woods:

A teenager recently dismissed from an intensive autism treatment program in Kalamazoo County remains unconscious in a Grand Rapids hospital Thursday morning, suffering from carbon monoxide poisoning authorities say was part of a failed murder/suicide attempt by her mother.

The 45-year-old Benzie County mother is hospitalized, too, and has been arrested and a warrant authorized charging her with attempted murder; she is under protective custody, according to a news release by the Michigan State Police in Cadillac.

Friends have identified the mother as Kelli Stapleton, who has written of her experiences with her 14-year-old daughter, Issy, in a blog, "The Status Woe."

The family was featured in an Associated Press story in March that told of Issy's acute autism, episodes of violence, and the family's struggle to fund a full eight-month treatment program in Kalamazoo County.

It's disturbing reading in retrospect, particularly Kelli Stapleton's last post on her blog, entitled When a power player takes you down, which is a mixture of exultation over Issy's having finished her intensive autism treatment program and despair over the local school refusing to accept Issy at the last minute before school started, apparently after having agreed to take her. This appears to have been Kelli Stapleton's final straw.

This case has gained national attention, and the sorts of arguments being made are almost exactly the same as those being made by the Age of Autism contingent about the Alex Spourdalakis case. Just look at the Facebook page Support and Prayers For Kelli and Issy and the Stapleton Family, which is prefaced with the statement, "Please pray and support Kelli, Issy and their Family. Sometimes we are given more than we can handle. Walk a mile in our shoes and save your judgment. We are here for the Stapleton Family no matter what."

One wonders how long it will be before the same group latching on to the case of Alex Spourdalakis latches even more tightly onto the Stapletons. We're already seeing the same excuses for attempted murder, minus the autism biomed angle. Becoming "advocates" for the Stapletons would be a good way for the antivaccine movement to try to distract attention from the autism biomed angle on the Alex Spourdalakis case and promote the same message, but without the Andrew Wakefield baggage. I also can't help but wonder whether irresponsible reporting like that of Sharyl Attkisson had any any influence on the Stapletons, and whether we can expect to see any more cases like this. I hope not; I really don't want to have to write about this case again for a while (perhaps until the trial begins). However, I fear that we might.

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As an epidemiologist, I can't help but think that we're falling into "surveillance bias" now. We had the horrendous murder of Alex, and now we're looking for other cases. Some of us, unfortunately, will make the mistake of calling it an "epidemic" or an "outbreak" of parents hurting their kids. Without looking at the data (yet) but just knowing how these things go, I'm willing to make an educated guess that these kinds of horrible things have been going on for a while.

It was Alex's murder at the hands of his mother that "broke the camel's back" because we have an active, anti-vaccine organization trying to whitewash it. For the first time, from my point of view, the refuting of their ideologies is incredibly important because now we have tangible and tragic evidence of their ideology hurting someone very severely. (I'm also willing to bet it's not the first time that "alt med" deceptions and their ensuing disappointments have led someone to do something so unspeakable.)

As an epidemiologist, I can't help but think that we're falling into "surveillance bias" now. We had the horrendous murder of Alex, and now we're looking for other cases. Some of us, unfortunately, will make the mistake of calling it an "epidemic" or an "outbreak" of parents hurting their kids. Without looking at the data (yet) but just knowing how these things go, I'm willing to make an educated guess that these kinds of horrible things have been going on for a while.

It was Alex's murder at the hands of his mother that "broke the camel's back" because we have an active, anti-vaccine organization trying to whitewash it. For the first time, from my point of view, the refuting of their ideologies is incredibly important because now we have tangible and tragic evidence of their ideology hurting someone very severely. (I'm also willing to bet it's not the first time that "alt med" deceptions and their ensuing disappointments have led someone to do something so unspeakable.)

As an epidemiologist, I can’t help but think that we’re falling into “surveillance bias” now.

Of course, a large reason for the "autism epidemic" is surveillance bias; so, true, we have to be careful not to fall into that trap.

It was reported earlier this year that Attkisson was looking for an early release from her CBS contract, and there was circumstantial evidence that Fox News was trying to woo her. Which would be a more appropriate venue for Sharyl, given they also wish to divorce themselves from scientific facts and have anti-vaccine hosts (Alisyn Camerota, Don Imus).

By Sebastian Jackson (not verified) on 06 Sep 2013 #permalink

Ren, I believe you are right. It would be nice to have data to back that up, but I see no reason to think that more kids are being killed by their parents now than before. In fact, it's probably less now that it actually occasionally gets legal action. It's been discussed on this blog many times how autistic children in ancient times were often labeled changelings or possessed, and beatings and even murder were considered not only acceptable but mandatory for the protection of the community. Children have long held the lowest rank in society. Even today, they seem to be the last group that our society still considers to be the property of another, even if we use other words and pretend we're more enlightened now. While it is very important that parents be allowed to raise their children in their culture, we cannot ever permit absolute parental autonomy. Those who push for absolute parental autonomy disturb me; it was that sort of mindset that allowed the abuse of children to be so social acceptable that it wasn't even remarked upon.

By Calli Arcale (not verified) on 06 Sep 2013 #permalink

From Orac's article, it seems that claims have been made of Alex supposedly having autism-related gastric pathology, _on the basis of endoscopic images_, not biopsies.

I am reminded of the now notorious "pig inflammation" study, which purported to show greater inflammation in the stomachs of pigs fed GM grain as opposed to non-GM grain, but which based its conclusions on naked eye viewing of the pig stomachs instead of microscopic sections which would have established whether there was any actual inflammation.

From a pathologist's perspective, it is rare for GI docs to _not_ take endoscopic biopsies from areas with suspected significant pathology, so I don't understand the conclusions apparently being drawn by the "autism biomed" crowd.

By Dangerous Bacon (not verified) on 06 Sep 2013 #permalink

If one has to preface his/her activities with "don't judge me," that usually means they are fully aware of the judgement they deserve. I announce it all the time before eating an entire can of Pringles or buying something in the "As Advertised on TV" store. Ren, I agree we have to be careful, but at the same time, this might bring attention to all the abuse and murder of children who are disabled fairly frequently.

All I want to know what the "lesions" were. When somebody says "lesions" to me, the eyes inside my head role unless they can specify the etiology of the lesions, or at least tell me they are going for further testing.

You bring up a good point re: the colon; the mentions are all endoscopy and upper GI results. As I was reading this post, the light bulb kind of went off. Now, I'm not an expert in quackery, but if I recall, wasn't Wakefield's original autistic enterocolitis focused on inflammation, hyperplasia, and "lesions" in the terminal ileum and colon, specifically where the ileum and cecum meet? Please somebody correct me if I'm wrong, it's been awhile since I wallowed in the mud that is that paper. And also, please correct me if I'm wrong, but I'm not aware of an upper endo reaching that far. They never examined the parts of Alex that fit Wakefield's original "hypothesis." OR they did, but it was entirely normal. There's no mention of an ileocolonoscopy. Has he expanded his BS to include upper GI?

That leads me to my next hypothesis, which almost makes me feel as dirty as them, but if my previous paragraph is accurate--again, please correct me if I'm not remembering correctly--then it would make sense why the family didn't receive the help they "needed" from Wakefield et al in the time period after his visit. Alex didn't fit his hypothesis after being examined by Dr. K, and so he let him drop. Now, a child is dead and they're doing damage control to blame the system that pushed poor Spourdalakis to the edge. (sarcastic emphasis on poor).

Like I said, I feel dirty and very conspiracy-y coming to such a disgusting conclusion, and all I have is what is being presented, or rather, not presented, and my very-limited knowledge. But we're dealing with the lowest common denominator of mankind here, so I don't find it to be too much of stretch.

By AnObservingParty (not verified) on 06 Sep 2013 #permalink

Ooops, somehow my last line got cut off. Add on to that long tirade "He wasn't the poster child they assumed."

By AnObservingParty (not verified) on 06 Sep 2013 #permalink

Anne Dachel just posted a screed on "Age" where she attacks Emily Willingham for criticizing CBS. Here is another gem from "AoA" trying to eulogize Dorothy Spourdalakis and whitewash her crime that Olmsted should know about:

I posted back about the parents who lead lives of quiet desperate dealing with a severely autistic child. I brought up the tragic death of Alex Spourdalakis and the coverage by CBS and the Daily Mail (UK).

She wrote back and slammed those who would cover Alex's mother sympathetically. And this led to her writing a whole piece today on the death of Alex where she described his mother as killing him in "cold blood" and blamed the autism community for the false idea that he had "a gut condition."

In her world, autism is never a real problem, (even though she's a parent herself). Parents linking it to vaccines and other health conditions like gut issues and seizures are simply wrong.

I did find something about the form of autism her son has. In this article, Willinghams described her son as someone who "excels at his grade level academics, and did not need extra resources or "care" to participate in a typical classroom setting."

This doesn't sound like the world of Alex's mother and godmother.

Ah, yes, because Emily wasn't in the same desperate situation as Dorothy means she obviously has no right to say Dorothy had other options available than murdering her own child -- options, it should be stressed again, that Dorothy refused. Anne goes on to assail Emily's "cold hearted attitude" -- as if excusing an act of premeditated murder is not a cold hearted attitude made manifest.

And true to Orac's prediction, Anne harps on the recent case in Michigan:

And what will Willingham, with her cold hearted attitude in the Spourdalakis case, have to say about yet another parent driven to desperation dealing with an autistic teenager? September 4, this story came out from the Traverse (MI) Record Eagle: Charges loom for Benzie woman in murder-suicide attempt.

[...]

I expect this story will appear in Willingham's next piece about a parent attempting cold-blooded suicide as well as murder. Will she also blame the autism community for this one?

The self-martyrdom is strong in this one.

By Sebastian Jackson (not verified) on 06 Sep 2013 #permalink

Will she also blame the autism community for this one?

I would like to see an example where Dr. Willingham, Orac, or any other skeptical blogger has blamed "the autism community" for these acts. Heck, I don't see anyone but the murderers being blamed for this. Certainly, skeptical bloggers are not blaming the children for being too difficult.

I know Ms. Daschel lurks about. Maybe she'll point us to an example? Something along the lines of "the autistic community killed Alex" or something like that?

Why are her words "cold-blooded suicide as well as murder?" I'm gonna say the murder part is what matters and is cold-blooded. Is she that dense or is it a Freudian slip?

By AnObservingParty (not verified) on 06 Sep 2013 #permalink

Please forgive me in advance for being sardonic-

Another biomeddler/ enabler in Alex's sad tale again emerges publicly without any mention of that episode-

Lisa Goes again posts @ TMR ,as the Rev- like Cat Jameson, she also appears @ AoA- advising TMs how to "Heal Yourself, Heal Your Child" ( Part 2) - her marvellous social work has been a feature at both outlets as she teaches, counsels and interventionalises her way into other families' lives: this "Rev" preaches the biomed gospel of St Andrew chapter and verse.

She offers a self-help guide for TMs who have sacrificed all for their children and now bear the burden of their own problems Over the past year ( TMR is only about 19 months old), she has already had to sign off for a while to deal with her own issues at JUST about the same time that her interventions with Alex had ...uh.. ceased, due to.. er obvious reasons.

She notes how hiring people to deal with a child's worst tendencies can be helpful- even though they do tend to quit for employment. I wonder why.

She instructs parents not to argue with people ( on social media) who are "grossly misinformed mainstream" supporters: they probably aren't really parents but " paid employees" of pharma. Most likely this characterisation extends to hospital employees as well.

Thus she confesses how her martyrdom included a sinus infection which she cured herself with green tea:
I wonder why she didn't offer some to Alex: it helps with inflammation, I'm told.

Pretend social workers and psychologists ( including some real ones gone astray) abound at TMR and AoA but Lisa Goes goes the distance for her clients: think about her much she did to help Dorothy. These professionals interact well amongst faux physiologists and struck off physicians in mutual enablement and mutual arse saving manoeuvring. Also they seem to excel at PR.

By Denice Walter (not verified) on 06 Sep 2013 #permalink

I hate to have a whole week dominated by a single topic on this blog, but if there’s a topic that deserves to dominate for a week, surely it is the exploitation of Alex Spourdalakis murder by his mother Dorothy Spourdalakis and his caregiver Jolanta Agata Skordzka by Sharyl Attkisson, Andrew Wakefield, and autism “biomed” apologists.

No need to worry, please carry on with this topic -- Olmsted et alare really on the ropes now, and it's long overdue. They've had quite the annus horribilis so far, haven't they? First there was Jake's defection, then the measles outbreak near St. Fakefield's home turf, the nearly universal condemnation of antivax pinup girl Jenny Mac being hired by The View, and now their pet reporter is being publicly rebuked for passing off their propaganda as news. Unfortunately it's too late for Alex Spourdalakis, but we need to keep the spotlight on AoA's involvement with the family. As someone else here noted recently, anytime Fakefield and his fan club wade into people lives, they leave damaged and suffering children in their wake.

By Edith Prickly (not verified) on 06 Sep 2013 #permalink

That should be "wade into people's lives"

By Edith Prickly (not verified) on 06 Sep 2013 #permalink

ASD and depression run in my family. There were times when dealing with my child's autism was made harder by my own battle with depression. I tend to withdraw and not seek help when I most need it. A person in such a position is ripe for exploitation by the quacks like Wakefield. This does not excuse murder, but I can so understand suicide.

Given then Krigsman (who no more deserves to be a doctor than Wakefield did ) has been sanctioned by 3 different state medical boards, including one for doing unethical research (endoscopies) on autistic children in a manner that makes Wakefield's unethical research methods pale in comparison, I don't know why anyone would (1) take their child to Krigsman for anything (I wouldn't let him scope my sink drains) and, (2) why anyone would believe any diagnosis Krigsman would give on endoscopy (especially given his penchant for diagnosing that fictitious entity "autistic enterocolitis"). Krigsman ought to be stripped of his license to practice--but this is American, so it is much harder than in England.

If there really was any pathology on that young man's endoscopy, it should be independently verifiable by both the images taken through the camera and the biopsies (were there any?..I've never seen an endoscopy where the doctor didn't take biopsies, BTW) by taking them to other pediatric gastroenterologists and pathologists (for the biopsies).

But Olmstead and his cronies won't dare allow that.

By Chris HIckie (not verified) on 06 Sep 2013 #permalink

The tell-tale signs of a self-serving woo physician who now thinks he's too good for the rest of the medical community (aka Arthur Krigsman, MD), from his own web site (http://www.autismgi.com/faqs.html ):

9. Does Dr. Krigsman only treat children with an autistic spectrum disorder?

No. While the majority of children we treat for gastrointestinal problems have an ASD, we also treat their unaffected siblings, many of whom suffer from similar GI problems.

10. What is the cost of a consultation for a child's GI problems?

The initial costs of a GI evaluation consist of the preliminary laboratory testing and the fee for the intake consult. The majority of the preliminary laboratory tests should be covered by your insurance carrier, but Dr. Krigsman's consultation fees are not covered by insurance. For those children who require an endoscopic or other diagnostic evaluation, the following fees may be applicable: operating room facility fee, anesthesiologist, and pathologist. These costs are often covered by insurance, but it is your responsibility to confirm with your insurer whether the services required are covered. Contact our in-office reimbursement assistance coordinator, Misty Winkler, for further details.

11. With which insurance plans does Dr. Krigsman participate?

Dr. Krigsman is not an in-network provider with any insurance carrier. Families with out-of-network benefits usually recover the majority of the physician fee. Related expenditures are typically covered in full when the provider is in-network, and you should check with your insurer for details on insurance-related issues. Contact our in-office reimbursement assistance coordinator, Misty Winkler, for further details.

So...Krigsman is too good to credential with insurance carriers...or it is he knows he is too reprimanded by state medical board that insurers would not credential him? And then the only other patients he sees are sibs of children with autism? How convenient is that--much less likely anyone might complain about his almost certainly unneeded endoscopies if they've already bought into his autism-GI woo.

A common trend here for those in the pediatric physician community who are wrongfully exploiting autism to make their living is being "cash-only" for payment. This suggests a way to quickly skim some of these quacks (as not only cream floats to the top) from the surface of medicine.

By Chris HIckie (not verified) on 06 Sep 2013 #permalink

@ Ruth/ STL:

People with ( or without ) depression and/ or ASDs are very vulnerable when they have to deal with difficult situations like a child's condition. Every additional issue may worsen the problems they experience: web woo advocates and altie social media exploit vulnerale people just like quacks do.

Beacuse they have problems at home doesn't excuse how they behave and proselytise.

Hope you're feeling better.

By Denice Walter (not verified) on 06 Sep 2013 #permalink

@ all:

Pardonez mes typos**, svp

** Et mon Franglais.

By Denice Walter (not verified) on 06 Sep 2013 #permalink

An Emmy-winning investigative reporter who fails to mention that her primary source is co-produced by the best-known medical fraud in the Western Hemisphere? She'd better be feeling the heat! Then again, when I read the original news story of Alex's death and saw the Quackmaster General seated beside Alex's bed begging for money to rescue him from accredited medical care, I was sure he would finally have to slink away with his tail between his legs. But apparently, he can still work the footage into the promo for his comeback tour. Maybe I just don't have the pulse of the people.

Further note on G.I. "lesions": the lack of any verifiable pathology certainly doesn't exclude the possibility of someone having distressing symptoms.

What sets the B.S. meter going, though, is pointing to vague "abnormalities" visible to the naked eye on endoscopy (without microscopic correlation) or making conclusions about "inflammation" based on biopsies from tissue that normally contains a complement of inflammatory cells, without having reproducible, accepted criteria for when the amount/distribution/impact of those inflammatory cells equates to disease (the latter problem affected Wakefield's study on "autistic enterocolitis").

By Dangerous Bacon (not verified) on 06 Sep 2013 #permalink

I bet you there were no biopsies, or, if there were, they were negative. If there were biopsies with severe inflammation or clear pathology, don't you think Attkisson would have gotten them through her sources and trumpeted their existence to the world in her story?

Let CBS know they shouldn’t listen to a half a dozen hacks who turn up like worms after a thunderstorm to try to deflect attention from the real issue

Half a dozen? The Change petition has 1,646 supporters as I type this.

By Krebiozen (not verified) on 06 Sep 2013 #permalink

#22
This seems to be a case of absence of evidence IS evidence of absence.

There's no doubt Attkisson herself solicited feedback from her supporters to CBS via Twitter. She is also saying there is an "astroturf" campaign to censor her by paid shills blogging about the CBS coverage.

It's all on her Twitter feed. Here are three recent Tweets:

Sharyl Attkisson@SharylAttkisson3 Sep
another hallmark of astroturf or fake grassroots w/agenda is: they want stories censored entirely, they don't want you to even hear of them.

Sharyl Attkisson@SharylAttkisson3 Sep
Fortunately, I think most have come to recognize it. But for all those who have messaged me, do let CBS know you appreciated the story!

Sharyl Attkisson@SharylAttkisson3 Sep
On the Autism Murder story: yes, the predictable coordinated astroturf campaign begins! (Watch for key words such as "lies," "crank," etc).

She has other Tweets as well along the same lines.

You can follow her Twitter comments without acutally having to be a Twitter user yourself via the webpage here:

https://twitter.com/SharylAttkisson

By Woo Fighter (not verified) on 06 Sep 2013 #permalink

Here's her "paid shill" accusation:

Sharyl Attkisson@SharylAttkisson3 Sep
"Astroturfing" is rampant, esp. online (blogs, Facebook, Twitter). It means a special interest pays $$ to disguise itself and write blogs...

Sharyl Attkisson@SharylAttkisson3 Sep
...edit Wikipedia entries, have "letters to the editor" published or just post comments to online material to make you believe a disinterested...

Sharyl Attkisson@SharylAttkisson3 Sep
...grassroots party is speaking. Astroturfing is designed to provide the credibility of a non-conflicted source by masking the true source's...

Sharyl Attkisson@SharylAttkisson3 Sep
...by masking the true source's financial interests in the subject.

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By Woo Fighter (not verified) on 06 Sep 2013 #permalink

More semi-literate rants and threats on the "Contact CBS" article at AofA. Full investigations of Orac, calls to have him stripped of his license and fired, and the funniest, a threat of a class-action lawsuit against ScienceBlogs for inciting hatred.

Oh, and one commenter deliberately called him "Mr." rather than "Dr." because the title "doctor" is reserved for "caring individuals." That slight must really burn Orac's tushy and will no doubt completely ruin his weekend.

And yet they persist in calling Wakefield "Dr."

(Do any of their readers actually know anything about grammar or spelling, by the way? Reading so many of those misspelled, illiterate comments really hurts my eyes.)

By Woo Fighter (not verified) on 06 Sep 2013 #permalink

@Woo Fighter

Thanks for the heads up. I asked her if she's implying that blog posts critical of her coverage of Alex's murder were paid for by special interests. We'll see if she responds. (Doubt it.)

Thanks to Brian Deer, we have Dr. Krigsman's testimony at the Cedillo hearing:

http://briandeer.com/wakefield/cedillo-krigsman.htm

Scroll on down to see how Krigsman gets grilled about scoping autistic kids who have no symptoms of GI distress.

I'm willing to bet he did upper and lower GI scoping while Alex was sedated and Alex had no pathological findings.

@ Woo Fighter: I'm soooo distressed about the remarks made about me by the AoA posters...that I may never recover.

Todd,

I'll follow the fun on Twitter! Thanks for your effort trying to reach out to her.

By Woo Fighter (not verified) on 06 Sep 2013 #permalink

Todd,

Attkisson's claims of astroturfing and paid shills sounds very much like the paranoid delusional accusations of Eric Merola.

Speaking of which, there's some action afoot on the Burzynski front concerning two new websites, but that's off-topic here and this week is being devoted to Alex so I'll wait for a more appropriate venue to post that news.

Of course Orac is always one step ahead of us in keeping on top of this and we'll see a post from him in the next few days about the new Burzynsk clinic site and his old friend Sheila's new "Fighting Back United" site.

By Woo Fighter (not verified) on 06 Sep 2013 #permalink

lilady,

I’m soooo distressed about the remarks made about me by the AoA posters…that I may never recover.

You'd better recover! I for one would dearly miss your effortless idiot-evisceration (and their pathetic, impotent attacks on you, which I have to admit amuse me no end).

By Krebiozen (not verified) on 06 Sep 2013 #permalink

That comment by Jenny especially.we're not allowed to judge someone who's killed but she (the mother) is allowed to judge whether Alex's life was worth living. It also worries me that these people commenting seem to believe that the mother had no other choices available to her.

What is that full stop doing there

The result was that [Dorothy Spourdalakis] and Skordzka planned Alex’s murder for a week. They then tried to poison him. When that failed they apparently tried to slash his wrist. When that failed, they stabbed him in the heart with a kitchen knife.

I get that caring for an autistic child can be difficult. I can even see how it might push some people over the edge (a scenario consistent with what Orac says above about the Stapleton case). But it doesn't push anyone who is even halfway normal to spend a week plotting how to kill somebody, and then to make three attempts by three different methods before succeeding. IANAL, but that sounds like open-and-shut first degree murder to me, regardless of any mitigating circumstances (and I do not consider anything in Alex's medical history to qualify as a mitigating circumstance). If anything, Wakefield may have set himself up for accessory-before-the-fact charges, depending on exactly how he handled himself during his interactions with Alex and Dorothy.

Keep up the good work, Orac.

By Eric Lund (not verified) on 06 Sep 2013 #permalink

She is also saying there is an “astroturf” campaign to censor her by paid shills blogging about the CBS coverage.

I know little of your US media, but she does come across there as a lobbyist pushing for particular policies, and rallying her support base, rather than as a reporter.

What do *real* journalists do if they suspect that a negative public reaction to the reportage is being centrally organised? Do they conjure up vast conspiracies to account for the hostility, or do they shrug it off and point to the solidly-fact-checked basis for the reportage?

By herr doktor bimler (not verified) on 06 Sep 2013 #permalink

there was circumstantial evidence that Fox News was trying to woo her

Perhaps Attkisson's egregious behaviour in the Spourdalakis case is an attempt to seal the deal. It shows a willingness to take a self-exculpatory promotional video made by a possible witness in a murder case and screen it as factual public-interest footage, prior to the murder reaching trial. Maybe those are the kind of ethics that Fox is after.

By herr doktor bimler (not verified) on 06 Sep 2013 #permalink

I unfortunately just waded into that cesspool and the lack of awareness and mob delusion is outstanding. If I didn't know the commentors there to be so dim I'd swear it was a concerted effort. That is to say none of them are mentioning that this was a staged fauxcumentary by Wakefield and that Attkisson was merely a tool and vehicle for its televising. She didn't do jack with regards to an actual investigation but those fools are all crediting her with such.

By Science Mom (not verified) on 06 Sep 2013 #permalink

none of them are mentioning that this was a staged fauxcumentary by Wakefield and that Attkisson was merely a tool and vehicle for its televising.

Which raises another question. Suppose you are Wakefield, and you have been filming the family... their situation, their hopes, their behaviour in a therapeutic context. Then the family departs from the script and there is a murder / double suicide attempt. At that stage do you send a copy of the footage to the investigating authorities, as possible evidence in the case? Wakefield's response was to re-cut it as an advertisement for his services, and shop around for a friendly media outlet.
Then Attkisson had the option of sending the footage to the authorities. Instead she decided that the cause of justice would be better served by broadcasting it.

By herr doktor bimler (not verified) on 06 Sep 2013 #permalink

Good point HDB and to dove-tail into that, does showing this poison the potential jury pool? And yes, is this evidence? All in all, there just doesn't appear to be an upside to mindlessly televising this drek.

By Science Mom (not verified) on 06 Sep 2013 #permalink

I'm thinking the jury pool for the trials of the murdering mother and godmother have become contaminated.

Here's a mother of a child diagnosed with an ASD, who, based on that 4 minute Attkisson televised report, "condones" Alex's murder by Dorothy...because "she was in so much pain, so much f*cking pain..."

http://www.youtube.com/watch?v=CbHcr3JaPf8

Attkisson’s claims of astroturfing and paid shills sounds very much like the paranoid delusional accusations of Eric Merola.

Don't forget her basically incoherent claims of being "hacked" by shadowy forces, as opposed to simply being incompetent at administering a machine. This seems to have died a rather quick death, with no technical details released that I've run across.

An AoA commenter believes that Atkisson's next assignment should
...............................,,,.drum roll.....................................,,,,,,,,,,

investigate the sceptiverse.

Yes, Orac, his comrades in arms, fellow and sister sceptics and the minions.

Being often prescient, i've recently updated my wardrobe and hairstyle. I will look b!tching in that expose.

But we all will, trust me.

-btw- Narad:
Null also claims his "radio station" has been hacked recently, preventing his investigative reports about medical corruption being spread far and wide, I suppose.

It wasn't you, was it, oh Shadowy Force?

By Denice Walter (not verified) on 06 Sep 2013 #permalink

does showing this poison the potential jury pool?

I had assumed this to be one of the purposes of making and distributing the video.

By herr doktor bimler (not verified) on 06 Sep 2013 #permalink

It wasn’t you, was it, oh Shadowy Force?

I try not to break things, although I've gotten my share of grief for making simple observations to people whose job titles suggest that they're supposed to have some clue about what they're administering.* I can't find the story, though. One hopes that it's not as grievous as back in 2009 when Rima Laibow's infrastructure was dealt a savage blow by some entity completely disappearing a mission-critical, ah, Yahoo! group.

* "Here's you root password. Do you know what xhost is for?"

Orac, I read your post this morning (as I do most mornings) and all day my mind kept coming back to your observations about what was actually discovered via Krigman's endoscopy of Alex Spourdalakis. You noted that the images were flashed on the screen and the still frames were very low resolution. If only we could get all the images from the endoscopy and results from any biopsies that may have been done. If this goes to trial (as it probably should) we may get our chance.

As part of her defense, Dorothy Spourdalakis's attorneys will want to argue that Alex was suffering from GI issues. To prove such, they would have to enter as evidence the results of Krigsman's endoscopy. At that point, the evidence (the images and findings from the endoscopy) becomes, for all intent and purposes, public record.

If the the images and results from the endoscopy are open to scrutiny, and your observations are correct Orac, the trial could be a very bad thing for Krigsman.

It will be interesting to see if Wakefield, Tommey and others from GR or AofA will try to raise money for Dorothy Spourdalakis's legal defense. It will also be interesting to see if these same parties will try to keep the results of the endoscopy out of evidence. Either way, I would like to have the images and results of the endoscopy reviewed by a third party.

By Scott Bunkelmann (not verified) on 06 Sep 2013 #permalink

back in 2009 when Rima Laibow’s infrastructure was dealt a savage blow by some entity completely disappearing a mission-critical, ah, Yahoo! group

I didn't know that story, but gasp, Narad is not making it up.

Your donations are urgently needed! Also, buy Nano-silver.

By herr doktor bimler (not verified) on 06 Sep 2013 #permalink

back in 2009 when Rima Laibow’s infrastructure was dealt a savage blow by some entity completely disappearing a mission-critical, ah, Yahoo! group

OMG!
Telling her that a non-existent group doesn't exist? Those evil fiends will stop at nothing!

By Mrs Grimble (not verified) on 07 Sep 2013 #permalink

Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert?

By Harold L Doherty (not verified) on 07 Sep 2013 #permalink

I have been mulling this awful case over. Alex's death, and the snuffing out of whatever potential he may have had is a tragedy, whatever way you look at it. Other than this, what I also find disturbing is the message we get from Holographic and others: that when conventional doctors refused to provide quack biomedical treatments, Alex's mother saw Alex's future as hopeless.

It seems that she somehow became convinced that these quack treatments for autism were the only hope for her son (as an aside, I wonder if this will be raised in court in relation to her mens rea). The CBS video apparently buys into this completely and uncritically, as Krigsman is mentioned (not by name) but without any reference to his dubious status.

I have to ask how was it that Mrs Spourdalakis became so convinced that only the kinds of treatments provided by the likes of Wakefield and Krigsman were going to be of help? What information was she given that led her to this conclusion and by whom?

The AoA crew, judging by Holographic's comments here, seems to be unable to understand just how these treatments are viewed by those who base their opinions on science and evidence. From my perspective this is little different to someone blaming Alex's difficulties on demonic possession and then berating his doctors for not carrying out an exorcism.

I see the antivaccine movement and especially biomedical autism treatment proponents as bearing at least some responsibility for Mrs. Spourdalakis's despair, if not Alex's death. It is ironic that they attempt to shift this responsibility over to the conventional doctors who, quite rightly, would not provide the unproven treatments demanded.

This is the true legacy of AoA and its ilk, that spread the message that autistic people are damaged by vaccines (mercury, aluminum, monkey viruses, GMO foods, high fructose corn syrup, pesticides or whatever), have serious undiagnosed GI issues and that the only way they can be helped in any way is though 'biomedical'* interventions. They appear to have lost touch with reality in this area, and when the rubber hits the road, whether when there is an outbreak of a VPD, or a tragedy like Alex's death, they appear to be incapable of understanding the responsibility they bear.

I'm not sure what the answer is, but I am increasingly feeling that something should be done. We live in an information age, and the quality of the information we receive is of paramount importance; it informs all the important decisions we make, decisions that in some cases can be life-changing or even life-ending.

I am beginning to wonder if willfully disseminating misinformation should be made a crime. I don't know how that would work, and I'm not a great fan of draconian interference in our lives, but in a technological society, perhaps information and evidence should be protected from manipulation.

* This use of 'biomedical' seriously p!sses me off, since what are called 'biomedical sciences' in the UK is my field. I wish they would use a different term.

By Krebiozen (not verified) on 07 Sep 2013 #permalink

Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert?

Harold Doherty posting inane comments, who would have thought? How or why would this even be relevant Harold?

By Science Mom (not verified) on 07 Sep 2013 #permalink

So, if you hack somene's radio station, do you just make it play an endless loop of "Afternoon Delight"? Or would that be cruel and unusual punishment?
"mission critical Yahoo group"-- the ultimate oxymoron.
Oh, and this Atkisson person deserves to work for Fox "News". I'd call her a bottom feeder, but that insults innocent benthic species that have made no claims to be journalists.

Harold L Doherty,

Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert?

What a strange question. When has Orac ever held himself out as an expert on autism disorder? When did it become obligatory for someone to be an autism disorder expert to express an opinion about this case, which has been very widely publicized, on a blog? Those with no medical or scientific qualifications at all, even lawyers with a lack of any understanding of the scientific method, have been known to blog about autism in general and this case in particular.

I think Orac might be considered an expert on the ineffective and/or unproven quackery that is rife in the autism community, such as chelation, hyperbaric oxygen, chemical castration, various diets and supplements of varying eccentricity, chlorine dioxide by mouth and by enema etc. etc..

What is your position on that sort of quackery, Mr. Doherty? I have never been able to figure that out from your many comments I have read here and elsewhere over the years.

By Krebiozen (not verified) on 07 Sep 2013 #permalink

Shorter Harold (from that link):

"I'm awesome and know autism. I even have a Queen Elizabeth II Diamond Jubilee Medal to prove it! Emily Willingham doesn't and is exploiting the Alex Spourdalakis murder for evil intent. Oh, and it will be decided by the court, not bloggers."

That last statement is what I refer to as a "Well, duh!" statement and an attack on a straw man. No one is claiming that the Spourdalakis case won't be decided by the courts.

Add to that in the comments here:

"You can't comment on the Alex Spourdalakis case unless you're an expert in autism or have personal experience with autism. If you do comment your are proclaiming yourself falsely to be such an expert.!

Seriously, though, I share Kreboizen's curiosity about Mr. Doherty's stance towards autism biomed.

BTW, I added a couple of fresh quotes about the Spourdalakis case to this post, one from John Stone and one from Kim Stagliano. They are doozies, so much so that I wanted to feature them somewhere. I didn't think they deserved their own post, however.

Absolutely disgusting.

Then there’s John Stone:

I don’t know to what extent the concept of “diminished responsibility” is relevant to legal process in Illinois. There are potentially levels of mental exhaustion, sleep deprivation and physical abuse, not to mention the blind terror of not knowing how you are going to cope in one or two days time (let alone a week or a month) which by any ordinary reckoning might push these ladies well outside the category of first degree murder.

First degree murder seems to me to be the state washing its hands of its own culpability in these awful events. Some people might think that there should be no such distinctions but in a dispensation where there is it seems surprising (not to say vindictive) that they should not have been operative here.

I know a lot of people who have at one point fit the John Stone's scenario. Nowhere to turn, exhausted, emotionally drained, ready to snap, unsure how they were going to get a ride to work or to the hospital to visit their sick loved one, or where their next meal was coming from, or how they were going to provide for their children with the cancer diagnosis...hell, my own mother left my mentally-ill abusive father with two children under aged two, no job, no home, no money, no car, physically abused, emotionally exhausted, no where to turn....and not a single one of them ever killed anybody.

They don't seem to understand the crux of the outrage is that this mother planned--a week in advance--to kill her child, and then did it. This wasn't a split-second snap (which still would be murder), and now it's being shopped around to feed an agenda with several key components being left out.

And I still want to know WHY, if the biomed help was so desperately needed and "indicated" (I cannot emphasize those quotes more), Dr. K and Wakefield didn't pony up and provide it.

By AnObservingParty (not verified) on 07 Sep 2013 #permalink

" I am beginning to wonder if willfully disseminating misinformation should be made a crime" Krebiozen.

This is why I got involved in scepticism.

I have heard and read so many horrifyingly flagrant and cavalier instances of public mis-education that I nearly haven't words to express the volume: it is oceanic.

I hear about the "cult of the expert" ( via PRN) or read how (AoA) commenters deride our most illustrious, magnanimous and preternaturally gracious host for being unable to 'understand autism' whilst the perpetrators of swill like the aforementioned examples sit in judgment.

I am not a doctor or nurse or pathologist: I do however have some background in bio and physio and above all, the scientific method ( including statistical analysis).

I have had to view quite a few 'scope images ( family members' upper and lower GI) and have been enlightened by the experts who retrieved the images about what they meant ( I can -btw- recognise Barrett's at 20 paces). For some reason, I get sent on these missions.

Interestingly enough, there are images in books ( remember them?) and websites which reveal the intricacies of the categories utilised by experts. AoA scoffed when a certain journalist looked at AJW's tissue samples- as if a layperson cannot learn to discriminate visually apparent differences as instructed through a written system under expert guidance.

Any 18 year old art or biology student would be able to argue against that trope.

However, their own contributors play diagnostician and physiological theorists WITHOUT any relevant background.
I would myself prefer the 18 year old art student's analysis.

As a psychologist I would venture that many vulnerable people are targetted by these charlatans and spreaders of woo: I'm not only talking about the patients but also their caretakers and those who function as their medical decision makers.

Knowing these facts has often made me feel helpless and ineffective-
my own method of combat focuses on revealing what I find and disseminating MY OWN information in contradiction to the simplfied, one-note garbage I encounter which is passed off as holy writ or something even more worthy.

All of the hatred and invective hurled against SBM is merely a diversionary effort to keep their followers from looking into THEIR OWN miasmic den of iniquity.

They should take a closer look at theri own gurus and proselytisers.

By Denice Walter (not verified) on 07 Sep 2013 #permalink

Stone apparently doesn't even know what "diminished capacity" means, at least in the U.S. Perhaps he should have checked with Clifford Miller or something. Then again, if he did, that might explain it as well.

What this would do is reduce the charge from murder to manslaughter on the basis that Dorothy and Agatolanta were unable to form the intent requisite to murder. (Although I'm sure the AoA crew would be perfectly happy to throw the latter under the bus.) This is right out the window, as they were plainly able to premeditate the crime.

As far as I can tell, Dorothy has GBMI and the "good mother" (PDF; this is a law-student paper, but I'm lazy) defense. The latter might play better if she had skipped the knife.

^ (Pretty much the same ground is covered in section 3 here, but with the helpful addition of the phrase "motive deficit.")

This might be a good place to write about a question I was just asked, " How do you know what you're reading is garbage?"

Dr Barrett has a long list of warning signs @ Quackwatch.

BUT I tried to put together what sets MY alarms off:
- the purveyor of misbegotten nonsense tries to appear authoritative and uses complicated expressions and the longest words imaginable- they paint an over-articulated, complex picture- often to describe simple concepts. They speak as if *excathedra*.They "pull rank" on you.
- they share their arcane secrets with you
- they cast aspersions upon the current "state of the art"
- they suggest that you "deserve better" than what you're getting presently from the standard.
- they imply their own moral superiority - perhaps subtlely.
-they inform you that they are indeed the next wave- or whatever they're calling it this week- you can be "in" on it.
-they are supremely confident of their correctness.
-there's a whiff of mysticism that's often discernable.

An expert worth his or her salt would try, IMNSHO, to make it *easier* for novices to understand and use everyday language. They might teach that the current state of knowledge is the work of many unsung reesarchers and workers, not one person's property. They would tell the tyro where to LEARN more- beyond themselves. They might reflect upon the continuously transforming state of information and its long term evolution.

By Denice Walter (not verified) on 07 Sep 2013 #permalink

"Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert?"

Has Harold offered himself (with medal) as combination legal and autism expert?

Harold attacks those who are science advocates and defends those who promote quackery and vaccine fear, but he claims to be not aligned with the quacks/fearmongers.

Note that Emily is an "extremist" who is "exploiting" this murder. But he never commented on the Wakefield documentary.

Historically, Doherty has been a Wakefield supporter. I know he would disagree, but his actions say otherwise. He recently tweeted about the "replication" Of Wakefield's work. He was taken in by the old news story discussing the Wake Forrest U presentation at IMFAR that periodically resurfaces. Harold jumped on it.

By I. Rony Meter (not verified) on 07 Sep 2013 #permalink

Interesting, @ I. Rony Meter, and so I must ask

@Harold, do you know if Wakefield is giving medical advice as if he were still an actual doctor?

By AnObservingParty (not verified) on 07 Sep 2013 #permalink

"We’re seeing the full assault on low verbal, behavior-intense boys, girls, teens, young adults with autism right now...'
Yeah Kim...stabbed four times, poisoned, wrist nearly cut off and it's the criticism about the CBS news story that's the "assault"

By I. Rony Meter (not verified) on 07 Sep 2013 #permalink

Denice,

I know skeptics are often accused of worshiping science as if it were a religion, the old scientism gambit, but if in this modern day and age anything should be treated as sacred, and be protected from interference as blasphemy laws do Holy Writ, it should surely be the truth i.e. accurate information.

The damage that is being done by the oceans of misinformation and disinformation* freely available on the internet is incalculable.

* A mixture of truth and lies carefully designed to mislead, originally perfected by British

By Krebiozen (not verified) on 07 Sep 2013 #permalink

Intelligence during WW2.

Apologies for hiatus.

By Krebiozen (not verified) on 07 Sep 2013 #permalink

@ Krebiozen:

As I figure, we may not be able- by nature of our own status as humans- biased by perception and position, to ascertain the Nature/s of Reality/ies ( whatever it/ they is/are) but science is our best shot out of our own weaknesses and darkness.

By Denice Walter (not verified) on 07 Sep 2013 #permalink

Mr. Doherty: That's a new low, even for you. I don't expect you will give us the courtesy of a reply, if your past history of hit-and-run posting is any indication

Is your loyalty to Wakefield and the Journalists at AoA so impenetrable, that you don't understand that a brutal murder premeditated murder was committed by a mother and a godmother?

Where is your distress when you look at the staged video showing Alex manacled to a hospital bed naked except for an adult diaper covering his genitalia, which was featured on AoA, placed on YouTube and now, shown on National TV?

You do know, don't you, that the company Wakefield owns, sent a crew into the hospital to tape Alex? You do know, don't you, that Wakefield handed over the videotape to AoA to feature on their website? Wakefield's company placed the videotape on YouTube, where it remains, even after Alex was murder.

Wakefield discussed how he was shopping around his 18 minute documentary to Network televison, weeks several weeks ago, and if he hasn't already sold the documentary to CBS, he will find another media outlet to buy it.

I used to defend you, in spite of your support of autism quackery, because you were actively working toward the development of group home settings for kids and adults diagnosed with ASDs.
I was impressed with your personal advocacy on behalf of your beloved son and enjoyed your posts, pictures and videotape of your handsome, happy child. You and your wife so obviously love and devoted your lives to him and his future.

A while back your child was hospitalized for a real medical emergency and you were with him throughout his hospitalization. When he had a serious reaction to anti-convulsant medication and was again hospitalized, you were attentive to all his needs. I "get that"...because my own child needed my attention around-the-clock when he was hospitalized frequently for seizure control, status epilepticus and Todd's paralysis. I "get that" your child had a serious reaction to medication...my own child had to be hospitalized for impending liver failure associated with the four potent anti-convulsants he was prescribed.

You know nothing about Alex's hospital care except for what you read on AoA and the staged videotape that Wakefield's company produced and still has exclusive rights to.

Isn't it strange, that Alex who had to be in 4-point restraints, according to the biomeddlers, was transported to and from Krigsman's office located in Far Rockaway New York...more than 1,600 miles...unrestrained?

So, what about Alex, Harold?

Are you okay with his mother and godmother planning his murder? Are you okay with them using a kitchen knife to slit his wrist and then plunging that knife into his chest?

Are you okay with Wakefield sending a crew into the hospital to videotape those staged scenes of Alex manacled to his hospital bed?

Are you okay with Wakefield releasing that video to AoA, placing that video on FaceBook, and providing that video segment to Sharyl Attkisson? Are you okay with Wakefield having exclusive rights to hours of videotape showing Alex nearly naked and manacled to his bed? Are you okay with Wakefield's 18-minute documentary that he was trying to sell, or may have already sold, to network TV.

How can you look at your son and feel that the exploitation of Alex during his lifetime and continuing now, three months after his brutal murder is okay?

“Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert?”

Why would the court proceedings need testimony from an autism disorder expert? Harold Doherty seems to be under the impression that Alex's diagnosis is in question.

By herr doktor bimler (not verified) on 07 Sep 2013 #permalink

Then there’s John Stone again:
I don’t know to what extent the concept of “diminished responsibility” is relevant to legal process in Illinois.

Heaven forbid that he look it up, or ask someone. It's almost as if the purposes of his argument require Stone to keep himself in ignorance.

By herr doktor bimler (not verified) on 07 Sep 2013 #permalink

Harold Doherty...In the pocket of AoA, supporter of Sharyl Attkisson, Wakefield and the "Autism is Medical" biomeddlers and oh so understanding of Dorothy and the godmother who murdered Alex.

https://twitter.com/AutismRealityNB

@herr doktor bimler:

Why would the court proceedings need testimony from an autism disorder expert? Harold Doherty seems to be under the impression that Alex’s diagnosis is in question.

Maybe he thinks that whether the mother was right or wrong about biomed being her son's only chance has a legal bearing on the severity of the woman's crime?

By Matthew Cline (not verified) on 07 Sep 2013 #permalink

biomed being her son’s only chance
One thing we have learned from the Autism Disorder Experts at AoA is that there are an awful lot of biomed treatments which don't work... that's the only conclusion I can draw from all the testimonies about the wonderful results from hyperbaric chambers when nothing else worked, coming from people who move on next year to equal enthusiasm about the wonderful results from stem cell injections when nothing else worked.

By herr doktor bimler (not verified) on 07 Sep 2013 #permalink

HD Bimler @40: Wakefield’s response was to re-cut it as an advertisement for his services, and shop around for a friendly media outlet.

"I'm Andrew Wakefield, and I can do for your family what I did for the Spourdalakis family!"

The sick thing is it looks like a lot of people at AoA would take him up on the offer.

Science-Based Medicine (the website, not the concept) appears to be non-functional at the moment, which is too bad because there was hilarity in the comments on Mark Crislip's Friday post.

First, Dr. Jay pretending to do a volte-face on vaccine safety.

Then, this numpty with a BA in economics was lecturing the multitudes on vaccine safety and efficacy, and which vaxes to avoid and the like.

Back on topic: The esteemed ToddW on Sharyl Attkisson's attempts to disparage the integrity of folk who criticize her:

Sharyl Attkisson Accuses Critics of Astroturfing.

Now, some of you may feel like reporting these tweets to CBS in an effort to get Ms. Attkisson in trouble. I will say now, unequivocally: DON'T! She is certainly being petulant, little more than a whiny schoolyard child who does something wrong and, when called on it, cries to all her friends that "so-and-so is a big meanie!" Yes, she is behaving in a silly manner, using bad arguments and making defamatory statements about her detractors. But she is doing that as a private person, not as an employee of CBS. Try to understand the distinction between her as a reporter, doing her job on a CBS broadcast, for which she is paid vs. using her personal Twitter account on her own time, expressing her own misguided opinions, for which she is (presumably) not paid.

Liz Ditz:

Then, this numpty with a BA in economics was lecturing the multitudes on vaccine safety and efficacy, and which vaxes to avoid and the like.

Yeah, I tried replying to him three times, but I got directed to the link farm site.

The article is on a Google cache, so all can read Abe's "brilliance." He loves Dr. Bob Sears. Apparently he thinks Dr. Bob is better informed than Dr. Crislip, a real infectious disease doctor.

Try to understand the distinction between her as a reporter, doing her job on a CBS broadcast, for which she is paid vs. using her personal Twitter account on her own time, expressing her own misguided opinions, for which she is (presumably) not paid.

Attkisson is doing her best to blur that distinction when she uses her personal Twitter account to urge her readers to deluge CBS with their own astroturfed messages of support for her paid work there.

By herr doktor bimler (not verified) on 07 Sep 2013 #permalink

@hdb, re: post #72 "all the testimonies about the wonderful results from hyperbaric chambers when nothing else worked, coming from people who move on next year to equal enthusiasm about the wonderful results from stem cell injections when nothing else worked."

I found that this was true of one extremely prolific anti-vax poster. She had posted a link to an article proving the MMR-autism link and, using a tactic that works well with my friends IRL, I looked up the link and tried to debunk the news site. I asked something along the lines of, "that website also has several articles that say coconut oil cures alzheimer's, hyperthyroidism and some cancers. It also has ads for coconut oil. Doesn't that raise some questions???" And she responded with testimonials for the GFCF diet which was "a miracle" and solved all her daughter's problems until the problems came back, after which she tried another diet which was "another miracle". It also turns out she was already making coconut milk yogurt "for probiotics," whatever that means. (So I learned that what works in real life doesn't work so well for crazy people in comment threads. My debunking trip to that quack website was for nothing, and I am now being chased around the internet by an ad for a gallon bucket of organic coconut oil.)

ruthq wrote

"My debunking trip to that quack website was for nothing, and I am now being chased around the internet by an ad for a gallon bucket of organic coconut oil.)"

Confirmation to me that Google is indeed EVIL

By Delurked Lurker (not verified) on 07 Sep 2013 #permalink

I am now being chased around the internet by an ad for a gallon bucket of organic coconut oil

Please tell me that Yakkety Sax is playing in the background.

By herr doktor bimler (not verified) on 08 Sep 2013 #permalink

Dear Dr. Orac. Thank you for acknowledging your total lack of autism expertise. For the benefit of readers unfamiliar with your "style:" I did not make the statement set out in quotation marks by the learned Dr. Orac. As for my medal it is simply a recognition that my involvement with autism, apart from my son's own severe autism disorder has also included 15 years of success full advocacy for all children and students with autism in New Brunswick, Canad to receive evidence based (as determined by real autism experts like those at the office of the US Surgeon General, the American Academy of Pediatrics and the Association for Science in Autism Treatment) early intevention and school instruction and support services. Neither Ms Willingham nor Dr. Orac have published any references to indicate they have done any advocacy for children and students with autism disorders. Instead they choose to attack parents of children with severe autism disorders about whose challenges both Willingham and Orac are totally ignorant and ill informed.

I support public vaccination programs and my family including myself receive all vaccinations recommended by our family doctor. This fall I will receive a flu vaccine as recommended by my treating respiratory specialist after I was hospitalized this past spring with a respiratory infection coupled with an aggravated asthma attack. I follow my doctors' recommendations. Although I am not convinced of the role of vaccines I do recognized that vaccines like any medical treatment can have side effects. This summer my younger son who also suffers from epileptic seizures ( for Dr. Orac's benefit a high percentage of persons with autism also suffer from epileptic seizures, particularly when like my son they also have an intellectual disability) suffered an adverse reaction to his anti-seizure medication of that time Lamictral/Lamotrogine. Even the US Vaccine Court has recognized that vaccines can have harmful side effects some of which appear to relate to autism symptoms. (Dr. Orac can challenge Dr. Jon Poling to a public debate on that issue if he wishes to show off his all consuming knowledge of science, vaccines and autism disoders. No I won"t hold my breath waiting for Orac-Poling match I don't think Dr. Orac has the parts for that).

Dr. Orac's venomous attacks on parents, professionals and journalists who do not share his views have not resulted, as far as I am aware in an increase in public vaccination rates in the US. Given that fact it is difficult to see why he engages in such childish unprofessional behavior other than one factor .... he enjoys making such attacks. There is only one person who has degraded Orac's credibility to speak on autism issues and that person is "Dr" Orac himself.

[Orac Note: Pseudonym substituted for Orac's real name.]

By Harold L Doherty (not verified) on 08 Sep 2013 #permalink

@Science Mom

fauxcumentary

As a French, I am positively delighted by this neologism. Is it yours?

Faux-cul is certainly a qualitative I would throw at some biomed doctors and other pearl-clutching creators of scientifically-dubious articles..

By Helianthus (not verified) on 08 Sep 2013 #permalink

Harold

Do us a favour....P^ss off D^ck head

By Delurked Lurker (not verified) on 08 Sep 2013 #permalink

Dr. Jon Poling apparently couldn't be bothered to keep his child up to date on vaccines, MISTER Harold L Doherty--not to mention he's done well exploiting his child for his own academic gain (http://leftbrainrightbrain.co.uk/2008/10/04/jon-poling-no-such-thing-as…), so get off your Poling pole, sir.

I see autistic children daily at my practice as a pediatrician. I advocate for them ALL THE TIME, as well as ANY OTHER CHILD who has special needs (I state that because I sense you have that attitude that autism is the only "worthy" diagnosis out there and that somehow you suffer more than the parents of a child with Down Syndrome or parents who've adopted a shaken infant (or many other diseases/conditions that leave you with children who will have severe developmental delays). And contrary to faux pediatricians like Gordon and Sears, who seem to believe they are the only pediatricians who "get" autism, most pediatricians do "get" it and work hard for those children (and I guarantee you there were pediatricians where Alex lived that would have advocated for him as well). I refuse to let people like you put in the "victim" badge as though none of us care about you, because that is a LIE.

I also see parents who think they're "smart" about vaccines because they read something on facebook or google or "Dr. Oz" or youtube--and they are not "smart". I've also seen children die from vaccine preventable diseases. I've never seen this regressive autism your lot likes to claim happens after vaccinating. As a pediatrician and a neuroscientist and and a parent and a foster parent, the hubris and sheer ignorance your type shows about vaccines is appalling. And I will vouch 100% that what you claim to be "attacks" by Orac aren't. They are defensive against your ilk. It is your misinformed/misguided/profit seeking (pick any/all that apply to you) group that are attacking the basic infrastructure of child and public health with no basis in fact for your goal of dropping vaccine rates in the US (and the world if you are one of those dolts that wants thimerosal out of all vaccines worldwide) to levels where we will see morbidity and mortality. And BTW, with vaccine rates falling in the US and autism rates increasing, why don't you just slink away right now, because nothing you say makes a damn bit of sense.

Chris Hickie, MD, PhD

By Chris Hickie (not verified) on 08 Sep 2013 #permalink

Please tell me that Yakkety Sax is playing in the background.

No, but now that I've googled 'yakkety sax', maybe it will start?

Harold,

Thanks for clarifying your position, if only slightly.

I for one am grateful to both Orac and Emily WIllingham for doing their part in combating the misinformation about autism and its treatments that is spread by organisations like AoA. I have no doubt that the quack treatments they oppose cause immeasurable suffering to many autistic individuals, inflicted by well-meaning carers who have been deceived into believing they are helping.

I am astounded that anyone would defend this deluded movement. It spreads the message that autistic individuals are damaged, and that they will never develop unless huge amounts of money are spent on biomedical treatments, which leads to either guilt and despair (which as we have seen can have tragic results), or to severe financial hardship. I have seen on evidence that any of it actually helps autistic individuals at all.

This movement also spreads deliberate lies about vaccine safety, about herd immunity (as a matter of fact I have seen grossly inaccurate and misleading statements about this by you), and about the adverse effects of infectious diseases.

These people have stated that it is their goal to reduce vaccination rates, a goal which anyone with any understanding of this area of medicine knows will inevitably result in more permanently disabled and dead children. How could anyone with a conscience keep quiet about such a campaign?

How is it that a person who is an advocate for disabled children supports what seems to me to be a kind of organized child abuse, and a concerted effort to allow more children to be damaged by infectious diseases? I simply don't understand.

By Krebiozen (not verified) on 08 Sep 2013 #permalink

Another one of those typos that appeared after I hit 'Submit Comment' - should be "I have seen no evidence".

By Krebiozen (not verified) on 08 Sep 2013 #permalink

ruthq,

I am now being chased around the internet by an ad for a gallon bucket of organic coconut oil.

That is disconcerting. I have on occasion found myself followed by ads for things I have merely talked to people about, and don't remember Googling, leading to me to paranoid fears about electronic eavesdropping.

It is possible to opt out of Google's collection of your search and browsing history to target you for ads - go to your Google account and look for 'Settings for Google Ads'.

You can also see there what it has decided you are interested in based on your searches and browsing, which is interesting. Weirdly they think I am interested in 'Superhero Movies'. I have no idea why.

Regarding organic coconut oil, on the plus side, it is delicious. On the minus side it contains a large proportion of saturated fat. I have tried very hard to corroborate the widespread belief that it is somehow harmless saturated fat that is beneficial to health, as this would be fabulous but sadly my inner skeptic is deeply unconvinced.

By Krebiozen (not verified) on 08 Sep 2013 #permalink

@ Harold Doherty: How about replying to the questions I posted back at you at # 67?

Long before your child was born (1976) I began advocating for my own son and for all developmentally disabled kids and adults...to get them out of those human warehouses, the so-called "developmental centers", where they languished without active treatment and with staffing that was inadequate. Too bad you never looked at YouTube videos at Willowbrook...those were the conditions I encountered in those State institutions for the developmentally disabled.

I appreciated all the help I received from my contacts in State government, people in private agencies and in print and television media, who were "civilians" (not parents of a developmentally disabled child), who were genuinely caring about the needs of my kid and others who were similarly disabled.

I also advocated for increased resources/funding for those children and adults living at home with parents...for in-home and out-of-home respite care, for caregivers and needed prescribed therapies.

Now it is up to you to show me any posts by your pals at AoA, where they ever mounted a campaign to establish group homes for kids and adults in the community (right at home, right in the neighborhood).

BTW, if your profoundly intellectually impaired child was born the same year as my son (1976), he would have been classified under the DSM II Diagnostic Criteria as "Mentally Retarded-Profound" or Schizophrenia-Childhood Type.

http://www.unstrange.com/dsm1.html

So yeah, I'm calling bullsh!t on the brain trust at AoA...and any individual who claims that there were no autistic kids and adults, years ago.

What about Alex? He was exploited when he was alive and still being exploited after he was murdered.

What about Alex…whose mother and “godmother” planned his murder for a week before they sedated him and plunged a kitchen knife into his chest, repeatedly?

What about Alex…whose last moments on earth were moments of abject terror, as the mother and godmother who should have protected him, snuffed out his life?

As a French, I am positively delighted by this neologism. Is it yours?

Faux-cul is certainly a qualitative I would throw at some biomed doctors and other pearl-clutching creators of scientifically-dubious articles..

Yes, tis mine and it was upon actually saying it that I saw the double entendre. I'm glad you enjoyed it.

By Science Mom (not verified) on 08 Sep 2013 #permalink

Harold, you seem awfully concerned with who has "advocated" and who has not.

However, if you know anything about logic, you know that the correctness of an argument is not dependent upon who the holder of that argument is; it is entirely dependent on the argument itself. It doesn't matter if you were "advocating" from the moment you were tipped from the cradle, Harold; if you're wrong, you're wrong, and the way you dodge every one of lilady's questions about the specifics of Wakefield-et-al's conduct strongly suggests you know that conduct was indefensible - and know you're wrong to try deflecting the conversation onto the irrelevancies of who's going to testify as an "autism expert" at the trial and who's spent the most time "advocating", as if advocating for children to be treated with quackery was a good thing.

By Antaeus Feldspar (not verified) on 08 Sep 2013 #permalink

Something that struck me, Krebiozen, while reading your retort--which I whole-heartedly agree with--is that we often play into the anti-vaxers hands when we state that they would rather see a child dead than disabled. I agree with that assessment of them, however, it's misleading when we use it as a defense. There are very real, very RARE risks for adverse reactions to vaccines, but those are not what these groups are talking about. They are referring to autism. And while I am fairly certain I would rather have an autistic child than a dead one, the point is moot. When we respond to their drivel by pointing out that they think one is worse off being dead than disabled, are we implicitly conceding that the disability they fear--autism--is a risk of vaccination? Now, we all know that's not what we're saying, but do they? They have no set good precedence on the ability to think critically and intelligently. I think going forward, whenever I point out their obvious prejudice, I'm going to make it a point to follow it up with an emphatic, "but it doesn't matter, because THERE IS NO EVIDENCE THAT VACCINES CAUSE AUTISM."

By AnObservingParty (not verified) on 08 Sep 2013 #permalink

How is it that a person who is an advocate for disabled children supports what seems to me to be a kind of organized child abuse, and a concerted effort to allow more children to be damaged by infectious diseases? I simply don’t understand.

Since Mr. Doherty chose to go his usual bloviated and pompous route, I can probably shed some light on that question. Mr. Doherty strongly identifies with the AoA crowd and he believes that parents should be allowed to pursue any "treatments" they deem necessary. In other words, in spite of his seemingly legitimate work with autism advocacy, he has no problem with the dehumanisation and abuse of special needs children. Because it's the parents that matter.

By Science Mom (not verified) on 08 Sep 2013 #permalink

If Mr. Doherty could back off the invective, perhaps he could recognize one fact: writing about faux autism treatments (which, frankly, sometimes cross the line into abuse) is advocacy.

Because of this blog there are likely fewer parents who have given their kids bleach enemas, had their wallets drained by the Geiers and been misdiagnosed with "precocious puberty" and given Lurpon, chelated (often for years on end), and more.

I believe Harold has stood on he sidelines for all those discussions. Nice advocacy. I guess he was polishing his medal at the time.

Also, a bit of logic. If Orac can't discuss autism because he doesn't have a medal, Harold should shut up about medical issues until such time as he finishes a medical degree.

Harold, did Jon Poling engage you in any way--specifically did he engage you to arrange public debates? If not, you look foolish for bringing that argument in. If so, you both look foolish as the "I want a public debate" thing is a classic refuge of cranks.

By I. Rony Meter (not verified) on 08 Sep 2013 #permalink

Doherty has put a post up about Orac on his blog...the exact same comment he made here.

@Harold - it is a good thing that Scientific Consensus or Progress isn't determined by what is "popular" or whomever can debate the "best..." I prefer my Science to be true....

Speaking of "advocates," can someone please tell me a single thing that Wakefield has ever done for children with autism? Aside from giving their parents something to blame, that is.,,

By Marry Me, Mindy (not verified) on 08 Sep 2013 #permalink

"Seriously, though, I share Kreboizen’s curiosity about Mr. Doherty’s stance towards autism biomed."

If one criticizes biomed, Harold jumps in and attacks that people are anti-therapy.
http://autisminnb.blogspot.com/2009/11/chicago-tribune-says-autism-trea…

Note how "alternative" is in scare quotes.

He's recently tweeted about how his struggles to recover his son.

Keep in mind his main thrust has been to promote ABA with the stance that it is the one evidence based treatment. He does not want to weaken that stance by throwing full weight behind biomed. At the same time, he can be found promoting stem cells, HBOT and chelation as "promising" or "anecdotally" supported.

Two interventions which have shown some promise as autism interventions are stem cell therapy and HBOT (Hyperbaric Oxygen Treatment). There is also anecdotal evidence of parents who swear by chelation as an effective autism treatment. None of the evidence of these interventions rises to the level, in my mind, of evidence based effective interventions for autism - to date.

source

He loves the "I'm a lawyer. I'll wait for the verdict. You are all irresponsibly jumping to conclusions" argument.

Consider his ire at TimeOnline joining in the news that Wakefield's research was fraudulent:

These are obviously very serious allegations. Perhaps I am biased, being a humble, small town lawyer in New Brunswick, Canada but I prefer to await the decision of the tribunal before reporting the verdict.

Perhaps I missed it, but I don't see him reporting on the GMC results where Andy lost his license. So, we need to wait for "trubunals" where he wants to stall discussion, but he ignores them when they go against Wakefield? No bias there.

Consider this gem:

Professor Golomb's presentation provides an interesting framework with which to consider the continued pressures exerted on Dr. Andrew Wakefield over an article he wrote in 1998 for which, in 2011, he was denounced, by journalistic decree, as being guilty of fraud. A refutation of the Wakefield fraud allegations by research microbiologist David Lewis was published in the BMJ but has not received the major US or world media attention that the original fraud allegations attracted.

Note how the findings of fraud are "allegations" by "journalistic decree", and the response is a "refutation".

He tries to position himself as being a moderate but it's like Fox News being "fair and balanced".

On the flip side, the biomed groups love him. He's listed as the third best blog for autism biomed and recovery, after AoA and David Kirby.

https://suite101.com/a/top_autism_blogs_biomedical_and_recovery-a128539

By I. Rony Meter (not verified) on 08 Sep 2013 #permalink

Doherty has put a post up about Orac on his blog…the exact same comment he made here.

the classic--"I'm taking the discussion to my home turf where I can get my friends to tell me I'm really cool" tactic.

By I. Rony Meter (not verified) on 08 Sep 2013 #permalink

@ Harold:

Orac - and many other commenters @ RI- speak up BECAUSE they worry about how pseudoscience and antivaccine propaganda can adversely affect the health of children.

Orac 'attacks' " parents, professionals and journalists who do not share his views" BECAUSE following their advice can lead to deleterious consequences for children, families and communities
AND they are outlandishly vocal advocates for their
cause, broadcasting their nonsensical, crackpot theories far and wide, flooding comment sections of any news article that supports vaccines, opposing SB public health measures, attempting to silence critics through legal actions and trying to infiltrate the media with fantastical, counterlogical advertisements- like this film project- for their own brand.

If Orac is unacceptable, who then, pray tell, is?

AJW, a former transplant surgery trainee? AoA editors and contributors? TMR? Who there has an appropriate background? Occasionally advocates trot out a medical doctor who agrees with their antivaccinationism but amongst those, who is an expert on autism and/ or vaccination? Humphries, Blaylock, Tenpenny, Herbert? They are only presented because they agree, not because of their credentials: alt med 'experts' are acceptable too.

I was required to study both CNS physiology and cognitive development -although I am not an expert in autism. When I first encountered AJW's infamous paper, I immediately thought it odd: it didn't "sit well" with what I had studied.

Several years later, in autumn 2001 to be precise, my cousin expressed fears about autism and vaccination as he had an infant child : he asked me what I would do if I had a newborn. I told him that I had no fears about vaccines and that I suspected that the then current hubbub concerning vaccines was based upon unrelaible sources and irresponsible self-promotion.

Now why would I advise somebody who is important to me- and who had waited so long for a child- to do something dodgy? Because I believe what I said very strongly. He had the boy vaccinated with no ill effects- he is now a strapping 12 year old who does extremely well in school, sports and music. His father later thanked me for my advice.

I believe that those with an axe to grind about vaccines also take advantage of natural parental fears and do a dis-service to parents by manipulating their emotions. Many of these players are parents themselves ( see AoA and TMR) and thus may also be not serving their OWN best interests.

By Denice Walter (not verified) on 08 Sep 2013 #permalink

AnObservingParty,

Something that struck me, Krebiozen, while reading your retort–which I whole-heartedly agree with–is that we often play into the anti-vaxers hands when we state that they would rather see a child dead than disabled. I agree with that assessment of them, however, it’s misleading when we use it as a defense.

I agree with you, of course, but I'm a little confused, since I didn't state that in my tirade. To be clear, I meant that if they succeed in their publicly stated aim to reduce vaccine uptake, we will certainly see a concomitant increase in contagious diseases which cause both death and permanent disabilities.

It isn't just autism that they claim is caused by vaccines, by the way, they blame vaccines for allergies, asthma, ADHD, obesity and infant mortality in general. You could probably find they blame vaccines for athlete's foot and tooth decay, if you wade around in the antivaccine cesspool for long enough (something I don't advise).

By Krebiozen (not verified) on 08 Sep 2013 #permalink

#88 Try applying the coconut oil externally. It's quite nice for the skin.

I'm sorry Krebiozen, I didn't mean you said that, it was just that while reading your comment it struck me. Derailed train of thought at 8am after being up until 2:30, maybe?

My concern, and perhaps it's because the MAJORITY of what I come across is vaccines-autism, is conceding that some things are worse than others is admitting a causal effect, which is not the intent. Of course, that could be expanded to any of their ridiculous claims. Perhaps indirectly there are more of those things because those already fragile kids weren't culled by the disease (sorry to use such terrible wording) at an early age, but that is by no means causal. They don't understand logical stretches like that. It struck me how I could potentially be playing directly into their crazy-town hands.

By AnObservingParty (not verified) on 08 Sep 2013 #permalink

I am one of those crazy parents. You know, I'm thankful my son had received most his vaccines when I finally figured out that 7 years earlier, he had undergone what was at that time a reaction severe enough to have given him a pass for any further vaccines. I didn't know. All I knew was only crazy parents blame the vaccines even in 1993 So I didn't even take him to the doctor. Like an idiot I prayed. The next morning he was fine.

It was an HHE to his DTwP @ 2 mos., a brain swelling. There have been little to NO long term studies on HHE. http://www.ncbi.nlm.nih.gov/pubmed/3259305 But obviously what went on in the early 90's was serious enough that even Offit will not go back, while incidence of whooping cough continue to climb with the acellular Pertussis. http://www.reuters.com/article/2013/08/01/us-whooping-cough-booster-idU… When it works only 70% of the time it's hard to blame anti-vaccination zealots. Especially when pockets of the disease occur among a _highly vaccinated_ populations.

I respect Dr. Offit putting himself out there, but WHY will they not return to the whole cell? http://www.scientificamerican.com/article.cfm?id=whooping-cough-vaccine…

Do I blame the HHE for my son's Learning Disabilities? No...not really. It looks as though it could be genetic, but I don't know because he is adopted. BUT if tomorrow someone came about who had done intensive study on HHE and found it caused brain damage...that the 10+ point discrepancy between verbal and performance wasn't attributable to being bilingual...I would not be the least surprised. I'm just thankful he is so mildly afflicted.

By usethebrainsgo… (not verified) on 08 Sep 2013 #permalink

@ AnObservingParty:

You are correct: we have to be careful how we phrase things. About whether people would rather have a dead child than a disabled one: I have no idea. That would be very difficult to research. Parents who kill children are very special cases, not the rule, in any group or society.

I might think it *safer* and wiser to say that SOME antivaccine parents are terribly disappointed that their child is not perfect ( whatever that means) and are suffering and wishing for a "cure"- i.e. a transformed child who has no serious problems. They're wishing for a better life. Most people would prefer to be "better" or "perfect" *themselves* as well as having "better" or "perfect" children.

I also think that some antivax proselytisers speak hastily and say things that others might misinterpret. When a TM or AoA contributor shrieks about how her child is "damaged" and blames the establishment, venting hatred and promising reprisal, SB people should be glad that the aggression is directed at them and not aimed away from the household: people dealing with diffiluties often act out.
Externalising blame may help them cope with a difficult day-to-day situation.

Perhaps imagining their child as somehow damaged though may prevent them from seeing small changes that will certainly add up. However a few do celebrate small victories in print. I wish they'd not attribute the gains children make to ineffective biomed interventions though.

By Denice Walter (not verified) on 08 Sep 2013 #permalink

AnObservingParty,
Understood, I am no stranger to the sleep-deprivation-inspired non sequitur myself.

By Krebiozen (not verified) on 08 Sep 2013 #permalink

@ Khani:

Have you tried argan oil? It's magic**. Seriously, I just gave a guy a bottle- it has transformed our miserable, tangled, twisty hair into luscious, glorious marvelousness that teenagers envy.
I am not paid to say this by the Moroccan Trade Board.

** like J-sus. Thanks, Sarah.

By Denice Walter (not verified) on 08 Sep 2013 #permalink

Denice,

However a few do celebrate small victories in print. I wish they’d not attribute the gains children make to ineffective biomed interventions though.

That's the same phenomenon that sustains all of CAM, of course. Improvements that would have happened anyway attributed to ineffective remedies. Post hoc ergo propter hoc in action.

By Krebiozen (not verified) on 08 Sep 2013 #permalink

correction- #104
scratch that NOT-
"aimed away from the household"
OBVIOUSLY.

By Denice Walter (not verified) on 08 Sep 2013 #permalink

@ Denice,

Let me rephrase, again (I'm not doing well with this today, I blame the return of football and being a Bills fan)...the *risk* of disability over the *risk* of death.

And I do entirely understand the projection and venting aspect of blame; it's why I have far less contempt for those parents who buy into the nonsense than those who hawk it. YMMV, but I put far less blame on the "mommy warriors" than I do the charlatan who took advantage of their despair.

By AnObservingParty (not verified) on 08 Sep 2013 #permalink

@ Denice,

Let me rephrase, again (I'm not doing well with this today, I blame the return of football and being a Bills fan)...the *risk* of disability over the *risk* of death.

And I do entirely understand the projection and venting aspect of blame; it's why I have far less contempt for those parents who buy into the nonsense than those who hawk it. YMMV, but I put far less blame on the "mommy warriors" than I do the charlatan who took advantage of their despair.

By AnObservingParty (not verified) on 08 Sep 2013 #permalink

@ Denice,

Let me rephrase, again (I'm not doing well with this today, I blame the return of football and being a Bills fan)...the *risk* of disability over the *risk* of death.

And I do entirely understand the projection and venting aspect of blame; it's why I have far less contempt for those parents who buy into the nonsense than those who hawk it. YMMV, but I put far less blame on the "mommy warriors" than I do the charlatan who took advantage of their despair.

By AnObservingParty (not verified) on 08 Sep 2013 #permalink

Three posts. Awesome. Sorry!

By AnObservingParty (not verified) on 08 Sep 2013 #permalink

usethebrainsgodgiveyou:

When it works only 70% of the time it’s hard to blame anti-vaccination zealots. Especially when pockets of the disease occur among a _highly vaccinated_ populations.

You've probably heard this before: Nirvana Fallacy.

None of the evidence of these interventions rises to the level, in my mind, of evidence based effective interventions for autism – to date.

Ah. So if Harold Doherty is asking whether Orac is an autism expert in the sense of knowing appropriate treatments, then the answer is necessarily No, because in Doherty's own lights there are no autism experts.

By herr doktor bimler (not verified) on 08 Sep 2013 #permalink

You know, I’m thankful my son had received most his vaccines when I finally figured out that 7 years earlier, he had undergone what was at that time a reaction severe enough to have given him a pass for any further vaccines. I didn’t know. All I knew was only crazy parents blame the vaccines even in 1993 So I didn’t even take him to the doctor. Like an idiot I prayed. The next morning he was fine.

It was an HHE to his DTwP @ 2 mos., a brain swelling.

So let me get this straight: You self-diagnosed a hypotonic-hyporesponsive episode 7 years after the fact?

P.S. G-d give you past tense, too.

The system failed Alex. He had intestinal issues after receiving vaccines. He was seen by several different doctors who confirmed the intestinal issues.

The hospital in Chicago continually said there is nothing wrong with Alex. The insurance company no longer wanted to pay for his treatment or non-treatment as the case may be.

It's said that the system in place is in denial as to what the medical community is doing to kids overall. Hippocratic oath- above all do no harm. That is why medical mistakes are the 5th leading cause of death in the U.S.

By Lori Harvey (not verified) on 08 Sep 2013 #permalink

Narad:

So let me get this straight: You self-diagnosed a hypotonic-hyporesponsive episode 7 years after the fact?

[sarcasm]
And here I am for calling 911 just because my kid had seizures. I must be a bad mother for depending on the views of a couple of neurologists.
[/sarcasm]

The system failed Alex. He had intestinal issues after receiving vaccines. He was seen by several different doctors who confirmed the intestinal issues.

Now it's several? In any event, it wasn't "the system" that smelled a cause célèbre in Alex and showed up with a camera crew, "liberated" him from the hospital (with Jeanna Reed making an ass out of herself for posterity), hauled him up to Krigsman, and then dumped him like a hot potato.

I'd say that sounds an awful lot more like "failing" someone, but that would leave out the "using him" part, which wouldn't be right.

medical mistakes are the 5th leading cause of death in the U.S.

I don't believe this. Wikipedia states, with references, that 39,000 patients die from medical errors, including unnecessary surgery, in the US each year. That would make it the 10th leading cause of death, according to CDC figures just above suicide (I am assuming that iatrogenic deaths are not included among accidental deaths, which they may be, so perhaps they are the 9th leading cause of death).

Consider that 51.4 million inpatient procedures are carried out every year (also according to the CDC), and that many of these are high risk operations in which patients are opened up and their insides rearranged in one way or another. I think it is remarkable that only 0.08% of these inpatient procedures result in death.

When I think about the inevitability of human error, exemplified by, for example, how many times my broadband provider or the newspaper I subscribe to make serious and repeated blunders, I think the medical profession does a pretty good job, all things considered.

They could do better, of course, and are constantly striving to, in my experience. They are most certainly not the butchers and dealers of death that CAMsters (including, apparently, Lori Harvey) would have you believe.

By Krebiozen (not verified) on 08 Sep 2013 #permalink

He was seen by several different doctors who confirmed the intestinal issues.

Are their names available, or are they gagged by a belated concern for patient confidentiality?

By herr doktor bimler (not verified) on 08 Sep 2013 #permalink

How is it that a person who is an advocate for disabled children supports what seems to me to be a kind of organized child abuse, and a concerted effort to allow more children to be damaged by infectious diseases? I simply don’t understand.

Harold usually takes a "hit and run" approach so he likely won't return. If he does, he will likely ignore your question.

Harold is simple really. He wants a cure. Desperately wants a cure. So the world is divided between those who support a cure and those who, at least in his perception, do not. AoA and the anti-vaccine crowd are 100% in on cures. They are his allies. Even though they attack public health. Even though they work with people as unethical as Andrew Wakefield. Wakefield is pro cure, so Harold defends him, to a point.

Harold's cure of choice is ABA. It is "the only evidence based treatment" as he touts. The evidence-based concept is very important to him.

Enter neurdiversity proponents. First, they do not like the typical cure language such as, "autism is so bad that anything to try to cure it should be allowed". Then add the autists who declare that they would refuse a cure if one existed. Then add the ABA debates that were big years back. A few neurodiversity proponents schooled Harold repeatedly about his misconceptions on ABA.

Then there are the sceptics. Typically people outside of autism. They criticize biomed for the lack of science and the sometimes dangerous therapies they promote. It's easy for Harold and others to redefine this as being anti cure, even though sceptics are generally not against evidence based treatment or even cure for autism. There just isn't one right now.

Harold has also accepted the idea that environmental etiology means curable and genetic means not. Years back he would write about genetic research as valuable. Now he ridicules it. Sceptics and neurodiversity proponents tend to accept that genetics has a major role in the etiology of autism.

I think Harold understands that biomed therapies are not evidence based. One of his favorite orgs is ASAT, which is very pro ABA and has a clear stance on biomed. My guess is that he would not practice biomed without evidence but that he desperately wants something to pan out so he can.

Where does that leave him? Sceptics and neurodiveristy ally on many topics, even though I suspect many sceptics would have no problem with an autism cure and though many in neurodiversity oppose the cure-at-any-costs language not the non-existent cure. Harold is willing to ally with biomed/anti-vaccine groups because cure outweighs everything. Over time he's certainly become sympathetic to their views on vaccine injury.

So for Harold he's willing to overlook little things like attacking public health. Just believe the "we are pro safe vaccines, not anti-vaccine" nonsense.

By I. Rony Meter (not verified) on 08 Sep 2013 #permalink

#107 Well, by "quite nice," I mean it feels nice, which is about all I ask in a skin product, really. Whether it actually helps moisturize I have no idea. I heard it did, but as it was definitely not from any scientific publication that doesn' t mean a lot either.

I melted the coconut oil, put in some coffee grounds and use it as a shower scrub. Cheaper than other scrubs and I like the coconut-coffee scent.

All natural, right? *And* not full of other all-natural things like arsenic, cyanide, etc. etc. etc...

Last thing I need in my hair is more oil. It seems to make its own. >.<

lilady@89

I know we have tangled here before,but I'm sure if I were to sit down and talk with you,I'm sure we would find we had a lot in common.I often think you need to have a blog of your own,if nothing else,so people could contact you,for good or bad.

I may not be intellectually disabled,but I have had just as many medical issues as your son,including some of the same ones,like severe megaloblastic anemia.I am also willing to bet I have had more regressions than your son did,but I may be wrong.

I am a few years older than your son would be.I was first diagnosed with autism in a school setting in 1971.I have mentioned this here before,as well as my mother's dedicated work in keeping me out of an institution/group home.I have nearly died a number of times myself,from either acute infection or heart failure,but am still here.A few years ago,I was found to have cerebral folate deficiency,and more recently,have found a (non DAN!) mitochondrial disease specialist,who is starting a workup for mito.This doctor believes I probably have one of those de novo mito deficiencies of more than one complex doctors are finding all the time now.Besides the folate stuff,I have brain,heart,muscle (severe),GI,and thymocyte involvement.

You never said what your son's specific diagnosis was,but it almost sounds like he had a form of mitochondrial disease.

I would not have posted here again had you not said what you did about calling bullshit on those at AoA,and other like minded individuals who claim that there were no severely disabled,or sick autistics years ago.This is a point I have been trying to make for years to anyone who might listen.I have been blocked at AoA,because this is not a message they want to hear.I have commented at blogs,such as Ginger Taylor's and not gotten a response.

I once naively thought that we could find adults in group homes,or residential treatment centers,and screen them for all the various inborn medical problems now known to present as autism,treat those that could be treated,so they could live on their own.Now I know this is not possible.I am a lucky fluke,an exception.

But it is because older adults with more severe or medically complex "autism" are locked away from society,that AoA can get away with saying they don't exist.

I know there are a lot of people in various segments of the health care profession who post here,but there is one point that needs to be made over and over again.There are a great many serious medical conditions that can present as autism,or be diagnosed as autism.Many are considered rare diseases,that few doctors understand.It's far too easy to get an autism diagnosis.This may be part of the problem.It is also a stigma of a diagnosis that makes a lot of doctors not want to treat,or investigate the underlying condition.I wish more people at this blog woud recognize this.

It is not something you can fully understand unless you have lived it.I am not condoning what Alex Spourdalakis' mother did,but I have been there.I know what it's like to contemplate suicide year after year,as the only out from sickness and suffering,and doctors who neither care about or understand your condition.This is one reason why the likes of Andrew Wakefield and Age of Autism continue to have such a hold on parents,after being proven wrong over and over again.

Most doctors are not worth defending,be they DAN doctors or mainstream medicine.It's just that simple.The good ones are rare gems,be it cancer,mitochondrial disease,or whatever.

By Roger Kulp (not verified) on 08 Sep 2013 #permalink

Also, Harold's "Orac admits he's not an autism expert" claim is silly in so many ways. The obvious one is that Harold is not a geneticist, not a doctor, not an epidemiologist, not a BCBA...he has no background in any of the areas he blogs on.

What is he? A lawyer. What do lawyers do? They argue legal aspects of topics outside their expertise.

Do any of the attorneys working the Wakefield/BMJ case know the details of autism, gastroenterology, or the like? No such luck. They know the law. Wakefield's attorneys aren't even experts in the legal issues of the press or defamation.

Science is about what the data most supports. Attorneys are about making the arguments on whatever side they are being paid to represent. Harold isn't being paid in this, but his training isn't in following the data.

By I. Rony Meter (not verified) on 08 Sep 2013 #permalink

Ms. Harvey:

He had intestinal issues after receiving vaccines. He was seen by several different doctors who confirmed the intestinal issues.

And your evidence is...?

Due to HIPAA laws the real doctors cannot speak about it until the trial. So it is interesting that you know so much.

usethebrainsgodgiveyou: The main problem is that immunity wanes so fast. I remember being shocked when I read a Discover article about a young woman in her twenties who was eventually diagnosed with whooping cough. And then a friend of mine from college got it and spent most of the fall semester at home. Needless to say, I take my booster shots seriously now.

By Politicalguineapig (not verified) on 08 Sep 2013 #permalink

Do any of the attorneys working the Wakefield/BMJ case know the details of autism, gastroenterology, or the like? No such luck. They know the law.

Well, there's always the foreign counsel.

This has to be quoted:

Enter neurdiversity proponents. First, they do not like the typical cure language such as, “autism is so bad that anything to try to cure it should be allowed”. Then add the autists who declare that they would refuse a cure if one existed. Then add the ABA debates that were big years back. A few neurodiversity proponents schooled Harold repeatedly about his misconceptions on ABA.

Then there are the sceptics. Typically people outside of autism. They criticize biomed for the lack of science and the sometimes dangerous therapies they promote. It’s easy for Harold and others to redefine this as being anti cure, even though sceptics are generally not against evidence based treatment or even cure for autism. There just isn’t one right now.

I'm not sure where I stand; on the one hand, I have my mentor developing a therapy based on low frequency TMS which alleviate rigidity in thinking in autistics and this won't cure autistic but where the rubber hit the road can be defined in two questions:

1-: does this decrease cost of supporting an autistic individual?

2-: does it help the autistic "perform"[1] better in life?

[1] == for lack of better wording, I'm running on reserve capacity.

Alain

oh, and another equation, if a cure for autism is developed, what does that make of Specialisterne, SAP, Microsoft and a number of other companies working with Specialisterne to benefit from the advantages given by an autism diagnostic.

Alain

Something's odd, I open this page in chrome and there are 128 comments while in safari, there are 129. I even reloaded the page.

Alain

Is the word "autist" an acceptable term to use to refer to an individual with autism? It seems like a useful word to me, but I have been reluctant to use it in the past for fear of offending or confusing someone.

By Krebiozen (not verified) on 09 Sep 2013 #permalink

Something’s odd, I open this page in chrome and there are 128 comments while in safari, there are 129. I even reloaded the page.

That's just Apple thinking they're 1+ better than Google.

By Chris Hickie (not verified) on 09 Sep 2013 #permalink

@Krebiozen

I've heard mixed things wrt to "autist". Some like it and use it themselves. Others do not like it, viewing it as implying that autism is some sort of choice, like other words that end in -ist. They prefer either autistic (as a noun) or autistic individual. Still others prefer person-first language (i.e., person with autism).

Personally, I'm not certain which form is best to use. I've used all of them.

@ Krebiozen:

I have no problem with using 'autist" or 'autistic" as nouns or 'people with autism/ ASDs" but then I'm an 'outsider' and therefore not the best judge.

They used to call film directors, who controlled everything in the making of their art, 'auteurs'.

@ Alain:

I like to think of all people as each being individual and unique webs of interwoven abilities that vary in strength as well as social desirability.

Here's a question:
If a person uses an ability that might be associated with an ASD and is successful, do people generally not go on calling it 'autistic'? ( Temple Grandin is too well-known to be an example)

Closer to home:
I have two female cousins** who live in two different countries who minister ( as assistants/ secretaries) to 'geniuses'- highly successful,well-known men who excel in their fields- an inventor and a designer. From the many tales I hear reported I do believe that both of them ( age 80+ and 40+, respectively) are AS or similar. Especially the older one. They seem to be doing alright - both financially and professionally.

** actually, there's a third who works for a bi-national comic and a fourth ( male) who works with many film makers, but I don't hear as many stories as I do from the two cited above.

By Denice Walter (not verified) on 09 Sep 2013 #permalink

Before I knew the meaning of autistic or autist, I used to call myself myself autistic but autist suit me fine too. I'll start using it.

Have to go.

Alain

Thanks Todd. "Autistic individual/person" just seems a bit cumbersome to me.

By Krebiozen (not verified) on 09 Sep 2013 #permalink

@ Roger Kulp:

"lilady@89

I know we have tangled here before,but I’m sure if I were to sit down and talk with you,I’m sure we would find we had a lot in common.I often think you need to have a blog of your own,if nothing else,so people could contact you,for good or bad."

Yes Roger, we have "tangled before", including this remark you made about Alex Spourdalakis' murder by his mother and his "godmother", somehow equating their crime with "assisted suicide".

http://scienceblogs.com/insolence/2013/06/12/why-wont-you-call-me-rfk-j…

"...That said,I don’t think you can understand where these families have been,unless you have been in a similar situation yourself.Quality of life trumps everything.This is why I support assisted suicide for people with cancer after all science based treatment options have failed.I’m sorry,but those at the mild end of the spectrum,who have been able to work,raise families,have no other serious medical or brain based comorbidities have no clue how bad things can get,or the depths of despair and hopelessness you can sink to,either as a parent or a person with more severe autism.The person with severe autism suffers greatly,even if they can’t communicate it.Have you considered they might not want to live the way they are living,and might choose to kill themselves if they had the choice?..."

You then make this comparison between my son and you...

"I may not be intellectually disabled,but I have had just as many medical issues as your son,including some of the same ones,like severe megaloblastic anemia.I am also willing to bet I have had more regressions than your son did,but I may be wrong."

Nope. Not even close.

Here we go again, with your opinion of the care I provided to my son versus the care your mother provided...because in your mind my activities with New York State to develop an Intermediate Care Facility with around-the-clock nursing staff (the first one in NY State) with enriched staffing for my son and other other medically fragile, severely and profoundly intellectually impaired, physically impaired wheel-chair bound kids was akin to dumping my child in an institution.

"I have mentioned this here before,as well as my mother’s dedicated work in keeping me out of an institution/group home.I have nearly died a number of times myself,from either acute infection or heart failure,but am still here.A few years ago,I was found to have cerebral folate deficiency,and more recently,have found a (non DAN!) mitochondrial disease specialist,who is starting a workup for mito.This doctor believes I probably have one of those de novo mito deficiencies of more than one complex doctors are finding all the time now.Besides the folate stuff,I have brain,heart,muscle (severe),GI,and thymocyte involvement."

Your point being Roger, that your mother's care of a child with far lesser intellectual, physical and medical needs to "keep you out of an institution or group home" was better than the care I provided to my son?

My son had no chromosomal abnormalities...his Karyotype was normal. My son was diagnosed with a rare genetic syndrome at age two by a team of geneticists, based on his multiple birth defects. I supported the foundation which partially funded grants (along with the NIH) for genetic research. The first de novo gene mutation was identified in 2004...a few months before his death.

The pancytopenia that my son had was a bonus and not just megaloblastic anemia. He did not just have megaloblastic anemia Roger. He had megaloblastic anemia, leukopenia, ITP with an additional platelet aggragation and adhesion disorder, which caused several internal bleeds.

"You never said what your son’s specific diagnosis was,but it almost sounds like he had a form of mitochondrial disease."

Nope. No mitochondrial diseases.

It seems that you provided a comment about your diagnoses which were made by a DAN! doctor, on Harold Doherty's scurrilous blog about Orac...

http://autisminnb.blogspot.com/2012/10/autism-stem-cell-treatment-resea…

"Autism Stem Cell Treatment Research: Who is the Real Quack? Gorski (ORAC) or the FDA?"

Scroll on down Roger to see your comment.

"Roger Kulp said...

Hi Harold,

I have not read your blog in ages.I like Gorski's blogs,but have to say you both have a valid point.Gorski is a cancer surgeon and sometime researcher.Both cancer and autism involve desperate families looking for answers.Gorski has said over and over again that he requires proof that something is real,that can be proven over and over again.

As you recall,I have a diagnosis somewhere in between Asperger's and classic autism,a lot of developmental problems as a child,a lot of medical issues,both immune and metabolic.Problems that have triggered multiple regressions over the years.

Like a lot of people born before the DSM-IV,I was officially diagnosed as autistic as an adult,but I had many other developmental and psychiatric diagnoses as a child.

I am not ashamed to say that I have been seen by a DAN! doctor since 2008.I have had a ridiculous amount of tests over the last four years,a lot of which I have requested.Early on,we found I had serious problems with both folate and B12 metabolism.Problems that could only be genetic.I have been on increasingly higher doses of leucovorin since.My autism,and related brain issues have improved dramatically.So much that it kept me out of a group home,when my mother died in April.My regressions,and seizures went away,and for the first time in my life,I am free of acute infections.

Two weeks ago,I was officially diagnosed with that new form of cerebral folate deficiency that has been the talk of the autism community.I have both of the autoantibodies.I am one of those who does not have mitochondrial disease,but instead has a different metabolic disease,methylmalonic acidemia and homocystinuria.Something the DAN! doctor found early on.

I was diagnosed through an experimental program at SUNY Downstate Medical Center.Now we need to figure out what kind of immune problems I have.

This is a disease that is both metabolic and immune.It is not like anything known to science before.

There is not a lot about cerebral folate deficiency out there,it was only discovered about 2004.One study I have found,is this one from Spain..It's behind a paywall,but you can read the graphs and charts.

Look at the lower left hand corner of figure three.It says hypogammaglobulinemia..There is quite a range for this disease.Read what it says at my link under vaccines in the "workup" section.Like the seizures in Dravet Syndrome,another cause of autism,a natural infection can trigger the immune disease,and I suspect the autism,if there is cerebral folate deficiency as well.I had acute meningitis when I was six months old.I suspect this did it for me.

So everybody is right here.It is genetic or inborn,and vaccines can be a trigger.I suspect like mitochondrial disease,this will be one of those things people will say causes "features of autism",but not autism.Fine with me.

But if I had a child who had no medical issues,and had true classic autism,this would not be the first place I would look.I would start by seeing if there were a history of Alzheimer's and Parkinson's in my family,and look into the work done at SUNY Upstate on that particular type of autism."

Roger, you still are not condemning Dorothy Spaudalakis...you still are equating Alex's brutal murder as an "assisted suicide" with this statement upthread...

"It is not something you can fully understand unless you have lived it.I am not condoning what Alex Spourdalakis’ mother did,but I have been there.I know what it’s like to contemplate suicide year after year,as the only out from sickness and suffering,and doctors who neither care about or understand your condition.This is one reason why the likes of Andrew Wakefield and Age of Autism continue to have such a hold on parents,after being proven wrong over and over again."

she is feeling the heat. she blocked me on twitter after i sent her many articles and the 'professional journalists code of ethics'. kim stagliano only parrots the same thing. i am non speaking, i have go problems, she would call me low functioning. but i am alive and proud autistic

By Amy Sequenzia (not verified) on 09 Sep 2013 #permalink

(I have a long comment directed at Roger Kulp, stuck in moderation)

A while back, a science blogger wrote about a boy diagnosed with an ASD, who was temporarily in a treatment center in Canada, undergoing evaluation. He was the victim of a horrific crime (beaten and bludgeoned and quite possibly sodomized and left to die in the woods behind the treatment center), perpetrated on him by an aide hired by the facility.

The blogger and I and several other commenters were involved in a discussion about the responsibility of the facility to conduct background checks and to make certain the supervisory staff does not permit an aide to take a child into the woods during the evening. We also expressed our profound sorrow that this boy was abused by a caretaker.

Two autistic self-advocates came on the blog simultaneously, looking to start a flame war because the blogger and I referred to the "autistic child" and referred to "children with autism" in our comments...with nary a word about the context of the blog...the abuse of an autistic boy at the hands of sexual deviant.

No...I will not link to that blog post, as I do not wish to embarrass those two autistic self-advocates. I publicly excoriated them for their pedantry and their utter lack of compassion for that child.

I personally use "autistic" and (people first terminology) "person with autism" interchangeably in my posts. Perhaps I prefer "person with autism" because of my nursing training i.e. not referring to Mrs. Jones as "the gall bladder down the hall".

I've seen people refer to themselves as an "autist" and several parent/science bloggers refer to their children as an "autist"...and I really don't care what the phraseology is; I judge the context of the comment, not the labels.

There is a live chat tomorrow at 12pm EDT (from what other sources have said, relating to the attempted murder of Issy Stapleton by her mother, Kelli Stapleton. Paula C. Durbin-Westby has been invited to participate along with an 'autism warrior mom' (I don't remember her name and I don't care enough to go look it up) who supports Kelli.

Paula has sent a request for any and all interested parties to bee there if you can to back her up, she doesn't want to be outnumbered by the AOA flying monkeys. The link to the notification regarding the chat is: http://www.mlive.com/news/kalamazoo/index.ssf/2013/09/kelli_stapleton_m… But it is unclear, from what I can tell, where and in what venue the chat will be held. I've commented to try and get additional information regarding i, but so far nothing more has been provided.

By Lara Lohne (not verified) on 09 Sep 2013 #permalink

I might be around. If you can get any more info Ms. Lohne, I'd appreciate it.

By Politicalguineapig (not verified) on 09 Sep 2013 #permalink

@Krebiozen #132:

Is the word “autist” an acceptable term to use to refer to an individual with autism?

Speaking as an autistic, yes.

By Julian Frost (not verified) on 09 Sep 2013 #permalink

Speaking as a non-autistic advocate for autistic folk, I rarely use "autist" as ...well, reading comprehension and so on, many either see it as "artistic" or assume it is a typo for "artistic" or just don't comprehend.

But it is a good word.

I deeply regret that I won't be able to back Paula up tomorrow, as it is scheduled for a time I can't be online.

Denise @ 60 - will it be OK to repost this? Somewhat OTT but the Making Sense of Fluoride FB page is dealing with an outbreak of pseudoscience (& *don't* get me started about the personal attacks) around fluoridation in NZ, & it would be good to see if those persons might (just possibly) recognise what they're doing in your words. And if not them, then the lurkers will surely benefit :)

@ alison:

Go ahead.

By Denice Walter (not verified) on 10 Sep 2013 #permalink

Uh huh. Well Harold. ORAC may not be an "autism expert" -- however you, in your tiny mind, define that term. But you know what he does have ? the years of medical and scientific training and experience to read and understand the current science on the subject and to come to an informed opinion. Further, he has enough wit to deliver his skeptical, science-based critique in a style that is entertaining and informative.

hmm. . . cut myself off there. to continue:
While ORAC may not be perfect -- to be honest he can be a bit wordy at times -- but he does a good job of poking holes in the pseudoscience and woo-woo that passes for the "other side" of the Autism issue. btw I don't have a medal either. Although I did write an article on Queen Elizabeth once. Oh, and I slept in a holiday inn express.

OMG! Crazy day for me! Sorry I completely spaced coming back with additional information regarding the 'live chat' this morning. It all took place in the comments of the article I linked in my previous comment and it is still open for additional comments. It was really awesome seeing so many autistic people speaking and being heard and sharing their experience, their knowledge and the tools they have all put together to help those of us who need it.

I almost felt sorry for Jessica Macaulay, the autism warrior mom who was asked to participate also. The entire time she just seemed to be on the defensive about ABA therapy and couldn't seem to answer the very simple question posed to her multiple times of what exactly she means by 'it was successful for my son'. Her final comment was not unlike a flounce. If you have the time, you should check it out, add to it. I doubt any AOA people will be back, if they were there to begin with, but there is some great resources and information that was shared and I feel so privileged to have been able to participate.

By Lara Lohne (not verified) on 10 Sep 2013 #permalink

Could you post a transcript or something later, Ms. Lohne?

By Politicalguineapig (not verified) on 10 Sep 2013 #permalink

@PGP #149,
Extraordinary. I find it hard to decide what to make of that story. The attempted murder-suicide part is hard enough to get my head around, but the subsequent apparent recovery? Does carbon monoxide cure or dramatically improve autism? Is it possible the girl was faking her autism and decided to drop the act after her mother tried to kill her because of it? I assume both of these scenarios are extremely unlikely, so what did happen? Simple coincidence?

BTW still photos can be extremely misleading, and leave us at the mercy of the selection bias of the editor who chose them out of who-knows-how-many others. I don't think you can come to any firm conclusions from them.

By Krebiozen (not verified) on 11 Sep 2013 #permalink

@Krebiozen, my first thought was that the father was simply better at interacting with Issy than the mother. You have a poiny, though.

By Julian Frost (not verified) on 11 Sep 2013 #permalink

Julian Frost,

@Krebiozen, my first thought was that the father was simply better at interacting with Issy than the mother.

I think Occam's Razor favors your hypothesis. If so it seems a shame the father didn't get a shot at caring for his daughter without the need for all that unpleasantness.

By Krebiozen (not verified) on 11 Sep 2013 #permalink

Krebiozen, the NY Daily News is a tabloid.

Fourteen-year-old Issy Stapleton, a violently autistic child whose mother allegedly tried to kill her in a botched murder-suicide attempt, is now walking, talking and smiling.

Issy was walking, talking, and smiling before her mother attempted to murder her. She had functional oral language.

The "recovery" mentioned isn't from autism, but from the carbon monoxide poisoning.

The pictures chosen were highly loaded. There are many loving pictures of Issy and her mother, as well as with her father, prior to her hospitalization.

To be clear: immediately after Issy was rushed to the hospital with carbon monoxide poisoning, it wasn't clear if she would recover at all.

Thanks Liz. It appears I have inadvertently taken a tabloid story too seriously. It isn't the first time, and sadly it probably won't be the last. Which brings me back to my recent plea for accurate information to become sacred (or the secular equivalent).

By Krebiozen (not verified) on 11 Sep 2013 #permalink

An interesting carbon monoxide fact, provided as penance for my gullibility: meat and fish (tuna and salmon I believe) are sometimes packaged with carbon monoxide in the US because the cherry-red color of carboxymyoglobin makes meat look more appetizing. It's harmless, but is a way of making stale meat look fresh, which isn't so good.

By Krebiozen (not verified) on 11 Sep 2013 #permalink

Liz: my bad. But I'm glad she's recovering from the murder attempt. I can only hope that she and her mother are separated until Issey's an adult. I really think the best solution would be for Issey to not be near any of her blood relatives again, but I'm trying not to come down too hard on the dad.

By Politicalguineapig (not verified) on 11 Sep 2013 #permalink

I am a skeptic and autistic advocate of neurodiversity, and while I prefer autistic or autist, "person with autism" doesn't offend me. I critique how it's considered "bad form" by NT organizations to use the adjective form and the ramifications of implying it's insulting to refer to us as autistic, but it's not offensive in the way that "vaccine-damaged" or "stolen child" are. I use the terms interchangeable (but typically don't use "person with autism" if only to balance things out a bit, and to demonstrate that it's not a taboo word), and will use what an autistic person prefers if they state a preference. Also, even if an autist prefers the "person with" form, I'm sure they would understand the desire to use shorter, less clunky phrases - I'm mostly highly verbal, but oftentimes I keep to short 2 or 3 word sentences, because spilling out a lot of words is difficult and exhausting. Autistic people of all people should understand this.

Alain: the TMS thing sounds interesting (not sure what is meant by rigidity though - is it the need for routine, literal thinking, or what?) My need for routine stems from a strategy developed VEERY early on to do things without getting overwhelmed by difficulties planning. As an adolescent I decided to abandon the routines and be spontaneous, and I lost a ridiculous amount of functioning in daily living, most of which I've got back by adopting some more flexible (yet relatively fixed) schedules, but still it was a major upset.

Personally, my first priority for a (legitimate, actually tested to work with minimal side effects for most) biomedical treatment would be for sensory issues. My ability to speak goes WAY up when it's quiet, no strong smells, no pain or itch, etc. Also sensory stuff is probably my biggest impairment in academic settings. Also auditory processing, which arguably contributes to a lot of sensory overload, because speech sounds are a confusing garble so often, meaningless background noise that is in the foreground. My first grade teacher, before I'd gotten diagnosed or evaluated, urged my parents to get me on ADHD meds (even though I'm female, never misbehaved, and sat quietly at my desk all day) due to my trouble "paying attention". I actually didn't have any difficulty paying attention and was actually attending carefully, but I often looked in a different direction to turn my ear towards her, and would not understand the instructions given, relying instead on doing what the person next to me was doing (which got me in trouble when they were goofing off and I would imitate, thinking it was part of a new activity). I still have trouble with verbal instructions as a college physics student - looking at pictures, diagrams, or math symbols are far quicker ways for me to understand a problem than long strings of words (because although my long term memory is excellent, my short term memory for verbal stuff is very poor - as in, in the time it takes to say one of the sentences I've written, I'll forget most of it but the last few words).

I signed the petition against Attkisson's inexcusable reporting. And it hardly surprises me that the attempted murderer used the word "woe" in her blog title. Also, perhaps it's pedentic of me, but the article (quoted, not Orac's) said "acute autism". In fact, autism is lifelong. They probably meant severe, but it confused me for awhile (I was thinking that maybe they were from a "biomed" angle where they try to make it seem "acute" because they mean you can "recover from" it. That doesn't really make sense, but it tripped me up.)

By Captain Quirk (not verified) on 11 Sep 2013 #permalink

Thanks Ms. Lohne!

By Politicalguineapig (not verified) on 11 Sep 2013 #permalink

Geez... mozilla really doesn't want to load this..

By Politicalguineapig (not verified) on 11 Sep 2013 #permalink

not sure what is meant by rigidity though – is it the need for routine, literal thinking, or what?

Literal thinking and at least, the ability to discern what is important vs what is not.

Potential situation illustrating the point:

My brother have a lot of problems with the bus services in general and recently, a bus driver refused to let him in and sent in the major finger (yes the insult) while my brother was taking him on camera. The brother decided to call me for that even thought I'm disinterested in the outcome because he called me over (potentially way over) 600 times regarding his particular issues with the bus system here over the last 2 years.

Another case in point, a guy called me (the equivalent of) fucking SSI tonight and this is the only occasion I mention because I do not deem it's important enough to mention.

Alain

not sure what is meant by rigidity though – is it the need for routine, literal thinking, or what?

Literal thinking and at least, the ability to discern what is important vs what is not.

Potential situation illustrating the point:

My brother have a lot of problems with the bus services in general and recently, a bus driver refused to let him in and sent in the major finger (yes the insult) while my brother was taking him on camera. The brother decided to call me for that even thought I’m disinterested in the outcome because he called me over (potentially way over) 600 times regarding his particular issues with the bus system here over the last 2 years.

Another case in point, a guy called me (the equivalent of) f*cking SSI tonight and this is the only occasion I mention because I do not deem it’s important enough to mention.

Alain

lilady,

do you mean we should check opensecrets.org and see that Vibrant Technologies (founded by Jennifer Larson who is now part of the Canary Party) donated $5200 to Darryl Issa? (Two donations of $2600 on 5/21/13)

That her company donated $29,800 to the republican national committee on 6/24/2013?

And $5,000 to "Invest in a Strong & Secure America ", Darryl Issa's PAC on 5/21/13?

Do we have the best government money can buy?

By I. Rony Meter (not verified) on 14 Sep 2013 #permalink

Sorry, comment added to the wrong thread.

By I. Rony Meter (not verified) on 14 Sep 2013 #permalink

Orac, Scienceblogs is once again vomiting out error messages.
Warning: include(): Unable to allocate memory for pool. in /var/local/www/natgeo/releases/20130913181553/wp-content/themes/ngs-science-blogs/ngs-science-blogs-base/carrington-core/utility.php on line 328

By Julian Frost (not verified) on 14 Sep 2013 #permalink

Another mother killed her two children, aged 11 and 13, in California over the weekend and attempted suicide.

One of her children, the 13-year-old, was autistic, but hey, it's alright because her vaccine-injury claim was turned down in "vaccine court." She had no choice.

The headline of this story is probably already being used as fodder for the apologists:

Documents Shed Light On What Murder Suspect Was Going Through

By Woo Fighter (not verified) on 16 Sep 2013 #permalink

@Woo Fighter

Once again, a mother successfully offs her children, but fails on the suicide. It's almost like these mothers are seeking sympathy and that they're just trying to get rid of their "burdensome" children so they can have a "normal" life.

If I recall correctly, that particular mother did not seek to appeal her case in the vaccine court. And, the father had custody of the kids. I have no sympathy for this woman.

I also noticed this bit from the article:

In 2012, Chief Special Master Patricia Campbell-Smith dismissed the case because there was not enough evidence to prove Jaelen’s autism was caused from the vaccine.

I wonder if Katie Conner is a woo believer, or just a poor reporter? Either way, she left out the context of the Autism Omnibus proceedings; the average reader would think it was just one particular judge deciding that in this one particular case, a vaccine didn't cause autism, rather than that multiple millions and years of hearings failed to find convincing evidence that vaccines EVER cause autism.

By Antaeus Feldspar (not verified) on 17 Sep 2013 #permalink

Not that there was not enough evidence, but that there wasn't any evidence indicating a causal link..

There seems to have been an awful lot of delaying, to the tune of five years, on Edge's part in this case.

I've been surfing a few of the news sites carrying the latest Autism murder / attempted suicide story.....the folks at AoA aren't getting very warm receptions there, as many Autistic Adults and parents of autistic children are posting in response that any sympathy for the mother is misguided at best & outright dangerous at worst (not to mention absolutely horrible all-around).

Orac - thank you for what you are doing. This AoA, biomed crowd is very loud (obnoxious) in our community. It's important that people like you shed light on their inconsistencies and immoral behavior so other parents can see the full picture. I learn so much from reading your posts and comments from your readers. I am a thankful mom who appreciates there are people who aren't afraid of the bullies.

By A Mom Who Can … (not verified) on 28 Oct 2013 #permalink